Thank you.
Wednesday, December 28, 2011
The Public Face Of Autism
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
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.
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.
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.
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.
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
* 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.
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...
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.
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.
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.
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.
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.
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.
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Basically, from what I've gathered, the site is composed of pictures of kids with their faces somewhat covered that are in strollers that are beyond the typical size most kids would require one. I already don't see how that is so funny, even if the kids don't have special needs. What's even more, the idiots that make the site actually think it's worthwhile enough to make fun of little kids that they pay to put up a website to do it. That's what caliber of people we're dealing with here. I don't expect to make them understand somehow that what they're doing is not okay, and harmful. When someone is that awful on the inside it would take much, much more than me and a few others complaining to get them to see, or care how they're affecting others. I'm not sure that anything could get someone that is that much of a bully to change. I just hope that by saying something to others that may visit the site, or another like it at some point, we might put that little bit of knowledge in their head of the other side of what they're looking at. That there may be more than meets the eye when you encounter something that seems out of the ordinary. Maybe, instead of laughing and staring one ought to have a bit of compassion. One of my favorite sayings is that 'you can't know everything about everybody.' Meaning, that everyone has their own life, their own struggle, their own story, their own pain, their own private life and this affects how they behave and come across to others. I find that it's best to always try to practice compassion when we encounter behavior or people we don't understand, because we can't always know the other side of the story. It's when we look through the eyes of compassion that we can truly see the other person as they are, not who we think they are, or what attachment of ourselves we're putting onto them. That's all our judgement is, anyway. It's a biased belief we hold as a result of our perception of what we think we see, or don't see.
I hope that the Too Big site disappears soon due to lack of interest on the public's part. I know that I have gotten the ugly looks when my son was younger and I still used a stroller. It wasn't because he was unable to walk. Much to the opposite, as he would run and was impossible to keep by my side at any given moment. Add that to the fact that my older son was also a runner, I had to employ methods to keep them both safe. Since, Beans was unable to even so much as acknowledge when he was being spoken to, much less follow directions, or hold my hand, I chose to use a stroller until he was about 5. Then, I used a harness for about a year, which also garnered it's fair share of attention. One thing I was adamant about was that I was not going to let others make me or my children feel inadequate. I never once flinched in the adversity of stares, or kept Beans at home unless I thought he would be uncomfortable with where we were going. He has every right to be out in public. So, special needs parents everywhere... hold your head high and do what is best for your family even when it may not always be the most popular, or comfortable. Inclusion means everyone.
Sunday, August 21, 2011
Back to school with Autism tips:
It's that time of year again. We've fought the madness of the school supply isle of the local store, bags are packed, new school clothes are washed...Ready for a new school year to begin.
If you have kids with special needs there may be a few more things to do. I have a few tips for parents that may be new to the special ed system and are looking to make their child's transition back to school as smooth as possible.
1. Make an info sheet about your child for the school staff.
I used to e-mail this list to my son's teacher, but after getting the feeling that they sped read it once then deleted it, I decided that this year I'd print one out and give one to everyone who will be working with my son. This sheet should include the following info:
* Your phone number and e-mail
* What your child likes to do, hobbies, ect.. (this helps to identify them as individuals, not just another student)
*What your child's strengths and skills are
*What special needs your child might have and how to identify their needs ie; I list the signs of my son when he's about to go into meltdown, or is already in one.
*List the proper protocol for dealing with problem behaviors and other issues that may come up. For my son, I list all the things that will calm him when he gets upset and how I expect them to remain respectful of him, because he can't help some of these things.
2. Make a very short info sheet for substitutes:
I always get the feeling that subs are not informed of IEPs and special needs that need to be attended to in the general ed classroom. So this year I have decided to make a very brief sheet with my son's picture at the top of it stating his name and that he has autism, and a few things to be aware of . Brief and to the point. The list of things to be aware of should only be 5 or 6 bullet points. Just something to give the sub a heads up that your child has special needs.
3. Put together an info packet for the new teacher:
Sometimes, I will put together a folder of info for a new teacher about autism. There are some teachers that want to know more about autism and I will give them a folder full of useful info. There are some that you can tell don't care and don't want to know. How much info to share is really dependent on the teacher's attitude. If the teacher is not very willing to learn very much of anything about your child's disability, then you are best suited to fill the folder with as little information that is pertinent, and to the point as possible. This increases the chances that they'll at least look at it.
Do you have any tips to share?
If you have kids with special needs there may be a few more things to do. I have a few tips for parents that may be new to the special ed system and are looking to make their child's transition back to school as smooth as possible.
1. Make an info sheet about your child for the school staff.
I used to e-mail this list to my son's teacher, but after getting the feeling that they sped read it once then deleted it, I decided that this year I'd print one out and give one to everyone who will be working with my son. This sheet should include the following info:
* Your phone number and e-mail
* What your child likes to do, hobbies, ect.. (this helps to identify them as individuals, not just another student)
*What your child's strengths and skills are
*What special needs your child might have and how to identify their needs ie; I list the signs of my son when he's about to go into meltdown, or is already in one.
*List the proper protocol for dealing with problem behaviors and other issues that may come up. For my son, I list all the things that will calm him when he gets upset and how I expect them to remain respectful of him, because he can't help some of these things.
2. Make a very short info sheet for substitutes:
I always get the feeling that subs are not informed of IEPs and special needs that need to be attended to in the general ed classroom. So this year I have decided to make a very brief sheet with my son's picture at the top of it stating his name and that he has autism, and a few things to be aware of . Brief and to the point. The list of things to be aware of should only be 5 or 6 bullet points. Just something to give the sub a heads up that your child has special needs.
3. Put together an info packet for the new teacher:
Sometimes, I will put together a folder of info for a new teacher about autism. There are some teachers that want to know more about autism and I will give them a folder full of useful info. There are some that you can tell don't care and don't want to know. How much info to share is really dependent on the teacher's attitude. If the teacher is not very willing to learn very much of anything about your child's disability, then you are best suited to fill the folder with as little information that is pertinent, and to the point as possible. This increases the chances that they'll at least look at it.
Do you have any tips to share?
Friday, August 19, 2011
Sense of Self:Part 3
This is a continuation of the Sense of Self posts that I have been written so far. I'm not sure where to go with it, or what direction I'm heading. This topic is so general and almost infinite it and of itself I feel that I could type forever and never get to a point... so I'm just gonna dive back in and start going where ever my mind takes me.
I have noticed a radical change in my 'self' as I have began meditating. It has been something of a treasure that was always there, but I have fully captured the essence of it now. I knew that this place of mind where I could openly feel without trepidation existed, but it didn't always feel available to me. I could catch glimpses of it out of the corner of eye and feel it at my fingertips... It seemed mostly out of reach, until recently.
But first, what is 'self'. This seems to be such a big question that many have asked and answered. When asked most NT (neurotypical) people will begin to describe their social roles, ie; 'I'm a mother, a teacher, a wife...'. I'm not engaging in bigotry, or saying that they're wrong to do this. I'm just pointing out what most say and do, so please hold off the PC squad on this one. This answer never seemed to make sense to me.It didn't make much sense with the Asperger ladies that I have discussed this topic with, either. I am a mother, and I like what I do for an occupation (if you can call it that) and I love being married to my husband, but is me? Is it what defines me? I have to say no. No, it isn't because I existed before my husband, my children, my career. I was me before they were around and if they were all to disappear tomorrow, I'll still be me. So, if 'me' isn't that, then, what is it? That was the question that I set to find out. That was part of the reason I ended up on the path to Buddhism and Mindfulness. I needed an alternate explanation to the riddle 'what is self?'
First, before I could move onto defining myself in any way I had to learn self awareness. This was a feat for this aspie. I had to know what I was feeling, and when. I had to identify my emotions and my wants and needs. I had to learn about me, then let go of me. I learn to recognize the little twinges of desire and the small nags of irritation. Where I carried my anger, where I felt my sadness, where I stored my breath in anxiety. This was all parts of me. Parts that I didn't know existed within me in such subtle forms. This journey of self discovery was overwhelming, but exhilarating.
Once, I could label my emotions and what they meant to me I could now begin to learn to let them go. My awareness now moved to time. Nothing is permanent. This moment is no more important than any of yesterday or tomorrow. What meaning I attach to it is one that is arbitrary. One that is made up and only experienced by me. Don't believe me? Think of a time where life was difficult. When you look back things don't seem so bad, do they? You may even have thought that you'll never feel better, or different, but you did.You have. While there is no doubt that we can and do suffer as humans, it's the attachments that we tack onto these emotions that we struggle with.
I feel that my self, me is defined by what I do,what I say what I am in every moment. It's never static. It's the choices I make that make me in this moment. My values and goals and how I choose to fit them into my life, is me. Every moment of everyday, I get to choose who I want to me to be. How I respond to stranger at the store, or my naughty child, or frustrated husband. My actions at that given moment define me. I'd like to think that I am a kind, generous, supportive, person, among other qualities. Before, I react to another person, or speak/act at all, I try to pause and ask myself if the person that I want to be is supported and defined by what I'm about to do. If I say no, that wouldn't be kind, generous, supportive, ect... then I have the option of behaving in a different way. One in which the me that I want to be is who that I am.
I have noticed a radical change in my 'self' as I have began meditating. It has been something of a treasure that was always there, but I have fully captured the essence of it now. I knew that this place of mind where I could openly feel without trepidation existed, but it didn't always feel available to me. I could catch glimpses of it out of the corner of eye and feel it at my fingertips... It seemed mostly out of reach, until recently.
But first, what is 'self'. This seems to be such a big question that many have asked and answered. When asked most NT (neurotypical) people will begin to describe their social roles, ie; 'I'm a mother, a teacher, a wife...'. I'm not engaging in bigotry, or saying that they're wrong to do this. I'm just pointing out what most say and do, so please hold off the PC squad on this one. This answer never seemed to make sense to me.It didn't make much sense with the Asperger ladies that I have discussed this topic with, either. I am a mother, and I like what I do for an occupation (if you can call it that) and I love being married to my husband, but is me? Is it what defines me? I have to say no. No, it isn't because I existed before my husband, my children, my career. I was me before they were around and if they were all to disappear tomorrow, I'll still be me. So, if 'me' isn't that, then, what is it? That was the question that I set to find out. That was part of the reason I ended up on the path to Buddhism and Mindfulness. I needed an alternate explanation to the riddle 'what is self?'
First, before I could move onto defining myself in any way I had to learn self awareness. This was a feat for this aspie. I had to know what I was feeling, and when. I had to identify my emotions and my wants and needs. I had to learn about me, then let go of me. I learn to recognize the little twinges of desire and the small nags of irritation. Where I carried my anger, where I felt my sadness, where I stored my breath in anxiety. This was all parts of me. Parts that I didn't know existed within me in such subtle forms. This journey of self discovery was overwhelming, but exhilarating.Once, I could label my emotions and what they meant to me I could now begin to learn to let them go. My awareness now moved to time. Nothing is permanent. This moment is no more important than any of yesterday or tomorrow. What meaning I attach to it is one that is arbitrary. One that is made up and only experienced by me. Don't believe me? Think of a time where life was difficult. When you look back things don't seem so bad, do they? You may even have thought that you'll never feel better, or different, but you did.You have. While there is no doubt that we can and do suffer as humans, it's the attachments that we tack onto these emotions that we struggle with.
I feel that my self, me is defined by what I do,what I say what I am in every moment. It's never static. It's the choices I make that make me in this moment. My values and goals and how I choose to fit them into my life, is me. Every moment of everyday, I get to choose who I want to me to be. How I respond to stranger at the store, or my naughty child, or frustrated husband. My actions at that given moment define me. I'd like to think that I am a kind, generous, supportive, person, among other qualities. Before, I react to another person, or speak/act at all, I try to pause and ask myself if the person that I want to be is supported and defined by what I'm about to do. If I say no, that wouldn't be kind, generous, supportive, ect... then I have the option of behaving in a different way. One in which the me that I want to be is who that I am.
Thursday, August 18, 2011
Things you wish adults knew when you were a child. The following are direct quotes from many adult autistics.
Now that it's time for school to begin I thought that I'd share a document that I put together a couple years ago about things that adult autistics say they wished their parents knew when they were children. I always print and share this with my boys' teachers and principls. They say that it's helpful in understanding them. Please, feel free to copy and share this where ever it may be useful. I'm not a computer wiz, so I was unable to convert the Rich Format to HTML code on blogger, so this is in plain text. The original document (WHICH CAN BE FOUND HERE IN PDF) is much nicer and easier to read. You can also ask me and I'll send you a copy via e-mail if you'd like. I had a lot of fun collecting all these tips from my fellow spectrum friends on WP, FB, and other places. Many of us are more than willing to share and help when asked.
Things you wish adults knew when you were a child.
The following are direct quotes from many adult autistics.
"When your kid forgets to do something they said they would do--they really did forget! I still do. Smile
My dad always urged me to "buckle down". Neither of us knew at the time that my "buckle" was broken, and although I had the best intentions, I didn't know how. I wish I had had specific, detailed, step-by-step directions on how to get those things done that I didn't know how to even start.
Don't expect your kid to infer anything. Just tell them. They are not ignoring your wishes or your needs. They just don't get it. Tell them and be specific. Tell them when they are doing it right, and if they aren't, calmly point out what needs to change. And if they overreact to that, just let them. In the years to come they will pick up some moderation. (Some.) It's not personal."
"Im still very forgetful, AND I don;t clue in to non verbal cues, so whoever thinks Im a "creep" because I dont clue in, they should do some research first before jumping to that conclusion.They would find that I would do as they have wanted if they clearly spelled it out for me verbally."
"Don't assume that just because I'm not looking at you that I'm not paying attention. I often will concentrate on what you're saying better when I'm looking away from you.
P.E, was torture for me. I am not coordinated, nor will I ever be. Some of my worst memories come from P.E. class. It really hurts a child's self-esteem to always be the last one picked for teams. There has to be another alternative rather than to put ASD kids through that."
"Always be positive!
Treat them just like any other child- they just want to be normal.
Give them special one on one attention. I thrive for that!
Dont hold them back- it keeps them from their full potiental. They can susprise you."
"I would always draw or play with the stuff in my desk or something during class, but I still heard what the teacher said. If I tried to just listen and sit still, I would drift off and start thinking about other things, because it was not stimulating enough to just listen.
Also, sometimes if I didn't have a sufficient explanation for why I should do something, I would refuse to do it. So I think I would have done a lot better in school if the teachers had explained a lot more, because they often didn't have good reasons.
And I think something else that would be nice is if teachers would sometimes tell awkward kids what they might do to not get teased as much. I don't know, maybe they're not allowed to do that for some weird reason, but I think it would be nice, since they're the ones who see the teasing happening."
"Don't attempt to make me look at the teacher when I am trying to pay attention. I can do one of them.
Don't make "choose a partner/team" group work mandatory this does not only refer to PE. It is horrible if everyone finds a partner immediately and I stand there and everyone does not want me.
The noise during recess was far more stressfull than the classes. I had to calm down from recess in class."
"
I don't always know what I'm doing is impolite, and I can't always control it (ie. laughing at inappropriate times).
Sometimes I don't speak because I REALLY don't know how to answer the question, and the MORE you try to force me to answer, the more intimidated I get, and the less likely you'll get an answer.
I get into a lot of trouble for defending myself in fights started by someone else, because I'm not as verbally skilled, and can't talk myself out of trouble like others. Don't automatically assume I'm in the wrong just because I cannot come up with a convincing -story-.
I don't always know when I'm being impolite, I just say what's on my mind, please don't make a scene out of it, just explain to me my mistake in private.
Sometimes when made to talk to the entire class, make a presentation, or when told to share ideas with the class, I get nervous, I stumble over my words, and I can't think clearly, which is why I usually cut the speech short, it's not because I'm not participating, it's because I'm terrified I'll make a mistake, and get made fun of by the whole class. You questioning me in front of the entire class as to why I won't participate makes me feel like crap.
Please be direct in your speech, don't use metaphors or sarcasm when asking me to do something, 99 out of 100 times, I won't get what you're asking of me."
"So many things...
Not stopping doing what I was doing when I was told to stop doing it.
Doing the same thing over and over and over despite being told not to do it.
Not looking at people when I spoke to them.
Speaking to people in a way that they interpreted to be condescending / patronising.
Not being able to make out what the teacher was saying because there was too much background noise.
Doodling constantly during lessons.
Doing things I wasn't supposed to be doing because I had finished my work and was bored.
Doing things I wasn't supposed to be doing because I didn't find the work interesting.
Not understanding things because I didn't understand the way the teacher explained them.
Not understanding things (especially maths) because of thinking too deeply about it.
Not liking certain lessons because I didn't like / get on with the teacher.
Never reading any books (I seem to have a bit of an issue with reading and tire of it very quickly).
Not understanding what behaviour was appropriate for my age.
Not having a clue what people were going on about when they started fancying other people and all that.
Not realising that I needed to be proactive to make friends.
Team sports were always a problem for me.
Also dance and aerobics involving copying moves off others was and is still a major problem for me.
That said, I'm totally fine at certain sports, such as running (but not sprints), swimming, climbing, dance (making my own moves), javlin, discus, shotput, cycling and also going to the gym don't cause me any problems. I think the key with sports is to stick to what you're good at. "
"Don't talk down to me (when I was a child and people used that sing-song tone it made me cringe)
Don't assume I ought to know something-inform me politely
Don't assume because I don't approach you that I want to be alone (that's a tricky one-sometimes I do) I don't know how to ask to be a part of a group-I'm afraid of rejection and need to be asked.
Don't assume I'm lazy-I can't focus and trying makes me very tired
Explain to me what I did wrong socially without attacking me"
"
I remember when I got in trouble for something I'd get the stern "look at me when I'm talking to you!" and dread it.
Negative reinforcement only pissed me off. I still have a grudge against my grandfather and he passed away over a decade ago. The horrors I went through with him...
I had a horrible time in school to the point where I was scared to death to go back. At that age I had no idea what to say, so I just cried. If only they knew how emotionally damaged I was. My grandmother said she could never understand why I flipped out. My mother, on the other hand, picked up on it. I ended up moving in with her after that situation. I changed schools, but I still went through a lot of problems.
Being constantly nagged to do things never helped me want to do them. Asking kindly would have made a world of difference, but parents don't think they should have to do that. Plus, back then, we had no idea what Asperger's was. My mother just said I was eccentric.
I remember when I first heard the band Rush. I obsessed over them for months. My mom thought that was insane, but their music was so complex and intelligent that I couldn't stop listening. It would have been nice to have a diagnosis back then, cos so much emotional stress could have been avoided. I wouldn't have been yelled at for my obsessions and odd behaviors."
"Maybe true for all kids, but when a kid says there is nothing wrong, they are likely lying.
The only way to get a kid to tell you the truth is to become someone they feel they can trust. Only then MIGHT you find out what's going on inside of them."
"Even though my parents knew that I was on the spectrum, I wish that they didn't do these things:
Things would have gone a lot more smoothly, if they didn't spank me. The only thing that I've learned from those spankings, was that it was okay to hit and punch the bullies, when they picked on me, and called me "retarded". They never did that again, though.
I wish that they would have let me talk about my special interests, at least at home, instead of getting angry at me, for doing so, no matter how much I talked about them. I didn't talk to any of my peers in high school, because my mum said, "As soon as those kids find out what you like, they're going to bug you about it!" That's what led to all that posting about Routemasters at WP in 2006. I've kept that obsession a secret from everybody that I had social contact with, off-line. One member tried to make me his project, by training me not to post about them, so much. If he only knew what I had to go through, and the many headaches, colds and flues that I've endured, just by keeping my special interests to myself, for so many years, he wouldn't have done that. My parents wouldn't have done that, either.
I also hated that "Look at me when I'm talking to you!" by my father, who I didn't trust at all. If he knew that I didn't trust him, he wouldn't have forced that eye contact. He would have treated me in such a caring way, that would have made me feel that I could trusted him and felt at ease with him to begin with, and than I would have given him that eye contact.
Some people on the milder end of the autistic spectrum appear to speak with a foreign accent. Mine happens to be the London Cockney. My parents spiritually abused me the entire summer that I was 12, by telling me not to speak with a nasal sounding voice. The following spring, I've told my mum, brimming with pride, that I have a bit of a Cockney accent. She said, "We can fix that." She changed her tune in a hurry, after most of my teachers wrote that I won't speak to my regular classmates, on my first high school report card. She asked, "Did anybody say anything about the way that you speak?" I said, "Yes...both you and dad did, two years ago." She said that she was sorry that she caused me so much pain. I've started talk to my mum and dad nonstop, again."
"it would have been really nice if:
my mother accepted that I'm a literal thinker, instead of getting frustrated and criticizing me, as if I were choosing not to understand her vague instructions.
my mother encouraged me and gave me some praise for what I did right, instead of focusing on what I did wrong and going on and on about it.
schools made kids like I was safe, which probably means keeping us away from bullies. it wasn't so much of a problem in grade school, but it got worse and worse as I got older until I just quit going to school.
schools provided behavioral classrooms as a matter of course, to assist kids who need coaching in personal hygiene and social skills."
"Don't sit me by the loudest kid in the class.
There was a boy in my class that must've had ADHD (severely) and he was always making noise, and touching people, and running into them. Those three things are probably at the top of my list of worst sensory issues. It seems that the teacher always sat me by him. My grades went down, because I couldn't concentrate, and my anxiety skyrocketed. It got to the point that I couldn't sleep at night, because I was so afraid of having to deal with this kid at school. He knew that touching me bothered me a lot, so he did it even more, because it was fun to him see me have a meltdown. I don't see how the teacher didn't notice all of this. I've seen this happen with my 7 yo son, too. I don't understand why the teacher can't make more of an effort to keep these kinds of boys as separate as possible from my son.
Oh, and it never even once occurred to me to ask for help with this issue. Sometimes, you have to pay attention to what 's going on with ASD kids, because they won't think to tell you about their problems. If someone would've thought to ask me, I'd probably have told them how much it was bothering me, if I could find the words, and felt comfortable talking to the person."
"Even when an autistic child is comfortable about telling something, it may still be impossible to ask the child about certain things. Often these things are information, skills or feelings the child experienced or learnt in another situation or another environment (school, home, kindergarten, club).
It is perfectly possible that if a teacher asks an autistic child about home it does not seem able to tell any or correct information. It is also possible that a child wants to tell something about school to his or her parents but simply cannot.
I'd also add in specific:
An autistic child may be perfectly able to do something in one situation and/or environment, but truly unable to perform the same skill in a different situation/environment. That everything from knowledge to learnt skills are only available to the child in certain situation is a difficulty that can come with autism."
"I wish that my teachers had realised that having hundreds of kids sitting in grouped tables, chatting away and having to cooperate was overwhelming for me. I'm willing to bet that some of my relatives (had they been young children during the 90s) would've had trouble coping with this set up too. Back in the old days it was single rows of silent desks. Back then, socialising was strictly a recreational activity.
I wish they could've realised how the school environment made it difficult for me to learn.
I wish they could have realised that my strengths (observing, analysing and recording the physical environment) were not being put to best use.
I wish that they could've realised that I was a caring person who feels deep emotions, but was socially clueless, so inadvertently offended people. I can read some facial expressions, so I wish they could've realised that I was not a completely "cold" asocial "monster".
I wish they could've realised that my out-of-sync movements during PE and dancing were not willful: I genuinely couldn't sync up with the other kids. I also felt an insatiable urge to do my own thing and develop my own style.
I wish they could've realised that I wanted to join in.
Actually, I wanted to join in and lead the activity in my own style and wanted to teach the other kids things without them telling me to "Shut up".
I genuinely wanted to be friendly and not upset people.
In fact, I was very concerned and felt very upset when I had inadvertently upset others."
"The whole choose a group or partner for a group activity was the worst.
Bullies are also a horrendous problem and a zero tolerance policy needs to be in place to deal with them. I remember being told everything I shouldn't provoke them (I didn't) to I need to stand up for myself (kinda hard when I was barely chest height). Teachers need to realize that yes some bullies have problems at home or something and act out by hurting other kids, some however are just sociopaths. There are no differences to work out (I've also been told to work out differences with bullies, seriously how stupid are some teachers) some bullies just like hurting other people and aspie or autistic kids make excellent victims for them. (I have very strong feelings about bullies)
I had one class where the teacher played music in the background, while the music was nice it was rather distracting. That might just be me though.
I actually calm down by moving, walking/pacing in particular. Trying to hold still just makes me agitated.
Just because it might take me a while to form the right words to answer a question doesn't mean I don't know the answer, or if I'm in trouble for something, that I'm lying or making a story up. I'm still working on ordering my thoughts so I can communicate properly. (I have a vague memory of being told something along the lines, don't sit there making something up, just answer the question) "
"This is a tip that goes for me:
If you are explaining something to me then ask, 'do you understand?' don't assume that my answer 'yes' means I DO understand. My hearing can only pick up certain words of speech (auditory discrimination issues) so my mind puts two and two together to get 3 most of the time! If necessary, write the thing down. This way it may be more comprehendable. Hope that helps!"
"That strong staff leadership and a sincere inclusive ethos can make all the difference.
That clear rules and guidelines can help a person know "where they stand" and what to expect.
That inconsistencies and "rules" that aren't spelled out clearly are confusing."
"That when I repeatedly said, yelled, and pleaded for them to leave me alone, that they did so instead of continuing to yell at me through my closed door. They caused so many meltdowns, rages, etc. that way. That's often an aspie's only way of expressing that they're becoming overwhelmed. It's a last-ditch effort to avoid losing control. If parents don't recognize and respect this, they will be largely responsible for the resulting "bad behavior". Parents of people with Asperger's need to learn when to back off and allow them to calm down.
People with autism frequently respond with more basic emotions than other people. Harsh tone of voice or a demanding attitude will often result in a heavily defensive response. If you want your message to be received, and to not result in the opposite effect, it is important to remain calm and polite. Whereas a non-autistic person may take a harsh tone to indicate you mean business, an autistic person generally interprets it as an attack and responds as such. This can result in an argumentative or hostile response.
People with autism frequently need to mentally prepare themselves before doing something, and also frequently have a poor concept of time. A timetable of "Now" causes stress, frustration, and anger. It is far better to give them a few minutes' warning and / or early reminders to allow them to prepare and be ready."
"The one that stands out is I wish my parents knew that just because I asked unusual questions about sex at a really young age didn't mean that they should panic and ban me from reading encyclopedias. "
"As a child, I always wished that the people who said, "You know you can always talk to me," understood that just because I didn't talk to them, didn't mean that I didn't want to talk to them. I couldn't. I had (and still have) problems organizing my thoughts and getting them out. Just be patient and I will do my best.
This one is especially for the teachers: when asked about my emotional state and I say, "I don't know," I really don't know. It's almost impossible for me to know what the heck I'm feeling and it is nearly impossible to articulate it.
Usually when I lose it, I'm blamed for my destructive behavior and never allowed to explain myself--even if I could. And never let your child feel guilty for something that was not their fault, nor let your child feel guilty for what they do not understand because that guilt will stay with them forever.
Also, most Aspies tend to have a long memory. My first memory is being in a crib and crying for someone to come to me. And then I heard my mother's voice saying, "Shut up!" To this day, I can't get over that. "
"I wish my parents knew that stimming is natural and important to me; that I need to do it."
"I recently made a list of things for my son's teacher that I wish my teachers had known. I got so tired of being told not to be a tattletale about things that were CLEARLY wrong, and I stopped and shut down with talking to my teachers altogether. "
" if I put my hands over my ears when you start whistling a song to yourself, or you want me to sing a song with you, or anything of the sort, know that maybe I just *can't* do it. It's possible that the whistling actually hurts, or that the extra auditory input of the sound is just too much. And quit tapping your pencil on the table if you want me to a) be sane and b) focus on anything else!"
"to consider face blindness and keep a 'signature' about themselves so they can be recognised and to use gesture and objects where possible and speak in bullet points."
"In a tense or stressful situation I may start to shut down. This often means I don't know how to handle or process all of the stimulus around me. Help me to see the light at the end of the tunnel and understand how I can be involved in the event."
"As a school child my world was hard enough and then I entered that huge empty echoing place, with so much noise I could not hear, I could not focus and impossible to read a blackboard if I you dare look, because if I did look up, someone laughed, made fun, yet more abusive. At times so unbearable, but no place to hide I had no choice but to endure. What the other children enjoyed and talked about, made me feel more of an alien.."
"I wish that teachers knew that I needed extra guidance. I was pretty much dropped off at school at 5 years old and expected to 'figure it all out'. That might work for some kids, but it just made the world a chaotic place for me for a few years there. In fact, what should have been done, was indeed done later when I was 9 years old... I went to a new school and one student there was asked to show me around and let me know how things worked, and where everything was. The difference that this made was like night and day. I thoroughly enjoyed my time at the new school, and excelled as a student as well.
I had a hard time making sense of the big picture as a child. I could figure out what was expected of me from moment to moment, with a little effort, but understanding how each part of my day made sense on a daily or weekly basis was impossible. A kind of tunnel vision with regard to my own life. A very narrow understanding. Experts tend to say that Asperger's children need structure, maybe these sort of difficulties are the reason.
I also wish that my parents knew that I needed personal, private time (grew up in a large family), and that noise was something I was extremely sensitive to. The home life that I had growing up was a pressure-cooker environment that made me a more anxious adult, I think."
"I wanted to have things set, and to stay the same. I did not like too much variation, fortunately perhaps in my childhood there wasn't much. Things are different today. When i was working as a teacher aide, my supervisor told me of an aspie boy who she had been helping. Technology classes at that school were taught in 'blocks' of ten lessons, then they were moved onto a new subject. For the first block, she took him into the room beforehand, introduced him to the teacher, who showed where everything was, told him what would happen, etc, he knew what to expect and the lessons went well. Unfortunately, she didn't think he would need the same when they moved on to the next block. He was so overwhelmed he spent the entire first lesson of the new subject sobbing in the corner of the classroom. Big lesson for her, and the other teachers."
"The biggest, please don't shout at me, if you do say sorry, please don't make me a spectacle, be kind to me, make me feel good about my differences not feel subnormal and less than human. Listen to me.
If just these things would have happened my younger life would have been less retched and less full of pain."
"I have difficulty answering this as I would say my difficulties emerged in my teens and further on.
I imagine (from the viewpoint of an older person) that an early diagnosis could have been helpful and I needed training not to take everything literally and to understand that authorities were just fellow human beings not enemies.
(Turning this around I suppose I wish teachers knew that I regarded them as enemies not because I was inherently nasty (although I confess I could behave that way to teachers) but because I felt they were trying to impinge on me by forcing useless information into me - I needed explanation as to why things were happening which was not of the "because I say so variety")
I failed to understand how teachers could make rules and then dislike people who told them other people were breaking the rules - did they or did they not want the rules kept, and were they or were they not responsible for enforcing them? I still find this one a bit puzzeling. I suppose nowadays they try and get buyinto rules by getting the students to work them out at the beginning of a year.
I think the most useful thing I could have been taught was not to take books literally - that I needed to prioritise what I could learn from life over what I could learn from books. I expected my life to play out like a novel and was constantly disappointed when it didn't.
I think aspie kids probably need to have time spent giving them details of different points of view."
"I wish that everyone wouldn't have made such a big deal about my eating habits. I still don't like most my food to touch, and I still eat only one item of food at a time on my plate. It's not worth hassling a kid over. I also have sensory issues with certain foods, mostly because of the way they smell."
I also wish that my parents would've taken my other sensory issues more seriously. If an autistic child is telling you that something is bothering them (that relates to one of the senses) take them seriously. Don't accuse them of being over-exaggerative."
Things you wish adults knew when you were a child.
The following are direct quotes from many adult autistics.
"When your kid forgets to do something they said they would do--they really did forget! I still do. Smile
My dad always urged me to "buckle down". Neither of us knew at the time that my "buckle" was broken, and although I had the best intentions, I didn't know how. I wish I had had specific, detailed, step-by-step directions on how to get those things done that I didn't know how to even start.
Don't expect your kid to infer anything. Just tell them. They are not ignoring your wishes or your needs. They just don't get it. Tell them and be specific. Tell them when they are doing it right, and if they aren't, calmly point out what needs to change. And if they overreact to that, just let them. In the years to come they will pick up some moderation. (Some.) It's not personal."
"Im still very forgetful, AND I don;t clue in to non verbal cues, so whoever thinks Im a "creep" because I dont clue in, they should do some research first before jumping to that conclusion.They would find that I would do as they have wanted if they clearly spelled it out for me verbally."
"Don't assume that just because I'm not looking at you that I'm not paying attention. I often will concentrate on what you're saying better when I'm looking away from you.
P.E, was torture for me. I am not coordinated, nor will I ever be. Some of my worst memories come from P.E. class. It really hurts a child's self-esteem to always be the last one picked for teams. There has to be another alternative rather than to put ASD kids through that."
"Always be positive!
Treat them just like any other child- they just want to be normal.
Give them special one on one attention. I thrive for that!
Dont hold them back- it keeps them from their full potiental. They can susprise you."
"I would always draw or play with the stuff in my desk or something during class, but I still heard what the teacher said. If I tried to just listen and sit still, I would drift off and start thinking about other things, because it was not stimulating enough to just listen.
Also, sometimes if I didn't have a sufficient explanation for why I should do something, I would refuse to do it. So I think I would have done a lot better in school if the teachers had explained a lot more, because they often didn't have good reasons.
And I think something else that would be nice is if teachers would sometimes tell awkward kids what they might do to not get teased as much. I don't know, maybe they're not allowed to do that for some weird reason, but I think it would be nice, since they're the ones who see the teasing happening."
"Don't attempt to make me look at the teacher when I am trying to pay attention. I can do one of them.
Don't make "choose a partner/team" group work mandatory this does not only refer to PE. It is horrible if everyone finds a partner immediately and I stand there and everyone does not want me.
The noise during recess was far more stressfull than the classes. I had to calm down from recess in class."
"
I don't always know what I'm doing is impolite, and I can't always control it (ie. laughing at inappropriate times).
Sometimes I don't speak because I REALLY don't know how to answer the question, and the MORE you try to force me to answer, the more intimidated I get, and the less likely you'll get an answer.
I get into a lot of trouble for defending myself in fights started by someone else, because I'm not as verbally skilled, and can't talk myself out of trouble like others. Don't automatically assume I'm in the wrong just because I cannot come up with a convincing -story-.
I don't always know when I'm being impolite, I just say what's on my mind, please don't make a scene out of it, just explain to me my mistake in private.
Sometimes when made to talk to the entire class, make a presentation, or when told to share ideas with the class, I get nervous, I stumble over my words, and I can't think clearly, which is why I usually cut the speech short, it's not because I'm not participating, it's because I'm terrified I'll make a mistake, and get made fun of by the whole class. You questioning me in front of the entire class as to why I won't participate makes me feel like crap.
Please be direct in your speech, don't use metaphors or sarcasm when asking me to do something, 99 out of 100 times, I won't get what you're asking of me."
"So many things...
Not stopping doing what I was doing when I was told to stop doing it.
Doing the same thing over and over and over despite being told not to do it.
Not looking at people when I spoke to them.
Speaking to people in a way that they interpreted to be condescending / patronising.
Not being able to make out what the teacher was saying because there was too much background noise.
Doodling constantly during lessons.
Doing things I wasn't supposed to be doing because I had finished my work and was bored.
Doing things I wasn't supposed to be doing because I didn't find the work interesting.
Not understanding things because I didn't understand the way the teacher explained them.
Not understanding things (especially maths) because of thinking too deeply about it.
Not liking certain lessons because I didn't like / get on with the teacher.
Never reading any books (I seem to have a bit of an issue with reading and tire of it very quickly).
Not understanding what behaviour was appropriate for my age.
Not having a clue what people were going on about when they started fancying other people and all that.
Not realising that I needed to be proactive to make friends.
Team sports were always a problem for me.
Also dance and aerobics involving copying moves off others was and is still a major problem for me.
That said, I'm totally fine at certain sports, such as running (but not sprints), swimming, climbing, dance (making my own moves), javlin, discus, shotput, cycling and also going to the gym don't cause me any problems. I think the key with sports is to stick to what you're good at. "
"Don't talk down to me (when I was a child and people used that sing-song tone it made me cringe)
Don't assume I ought to know something-inform me politely
Don't assume because I don't approach you that I want to be alone (that's a tricky one-sometimes I do) I don't know how to ask to be a part of a group-I'm afraid of rejection and need to be asked.
Don't assume I'm lazy-I can't focus and trying makes me very tired
Explain to me what I did wrong socially without attacking me"
"
I remember when I got in trouble for something I'd get the stern "look at me when I'm talking to you!" and dread it.
Negative reinforcement only pissed me off. I still have a grudge against my grandfather and he passed away over a decade ago. The horrors I went through with him...
I had a horrible time in school to the point where I was scared to death to go back. At that age I had no idea what to say, so I just cried. If only they knew how emotionally damaged I was. My grandmother said she could never understand why I flipped out. My mother, on the other hand, picked up on it. I ended up moving in with her after that situation. I changed schools, but I still went through a lot of problems.
Being constantly nagged to do things never helped me want to do them. Asking kindly would have made a world of difference, but parents don't think they should have to do that. Plus, back then, we had no idea what Asperger's was. My mother just said I was eccentric.
I remember when I first heard the band Rush. I obsessed over them for months. My mom thought that was insane, but their music was so complex and intelligent that I couldn't stop listening. It would have been nice to have a diagnosis back then, cos so much emotional stress could have been avoided. I wouldn't have been yelled at for my obsessions and odd behaviors."
"Maybe true for all kids, but when a kid says there is nothing wrong, they are likely lying.
The only way to get a kid to tell you the truth is to become someone they feel they can trust. Only then MIGHT you find out what's going on inside of them."
"Even though my parents knew that I was on the spectrum, I wish that they didn't do these things:
Things would have gone a lot more smoothly, if they didn't spank me. The only thing that I've learned from those spankings, was that it was okay to hit and punch the bullies, when they picked on me, and called me "retarded". They never did that again, though.
I wish that they would have let me talk about my special interests, at least at home, instead of getting angry at me, for doing so, no matter how much I talked about them. I didn't talk to any of my peers in high school, because my mum said, "As soon as those kids find out what you like, they're going to bug you about it!" That's what led to all that posting about Routemasters at WP in 2006. I've kept that obsession a secret from everybody that I had social contact with, off-line. One member tried to make me his project, by training me not to post about them, so much. If he only knew what I had to go through, and the many headaches, colds and flues that I've endured, just by keeping my special interests to myself, for so many years, he wouldn't have done that. My parents wouldn't have done that, either.
I also hated that "Look at me when I'm talking to you!" by my father, who I didn't trust at all. If he knew that I didn't trust him, he wouldn't have forced that eye contact. He would have treated me in such a caring way, that would have made me feel that I could trusted him and felt at ease with him to begin with, and than I would have given him that eye contact.
Some people on the milder end of the autistic spectrum appear to speak with a foreign accent. Mine happens to be the London Cockney. My parents spiritually abused me the entire summer that I was 12, by telling me not to speak with a nasal sounding voice. The following spring, I've told my mum, brimming with pride, that I have a bit of a Cockney accent. She said, "We can fix that." She changed her tune in a hurry, after most of my teachers wrote that I won't speak to my regular classmates, on my first high school report card. She asked, "Did anybody say anything about the way that you speak?" I said, "Yes...both you and dad did, two years ago." She said that she was sorry that she caused me so much pain. I've started talk to my mum and dad nonstop, again."
"it would have been really nice if:
my mother accepted that I'm a literal thinker, instead of getting frustrated and criticizing me, as if I were choosing not to understand her vague instructions.
my mother encouraged me and gave me some praise for what I did right, instead of focusing on what I did wrong and going on and on about it.
schools made kids like I was safe, which probably means keeping us away from bullies. it wasn't so much of a problem in grade school, but it got worse and worse as I got older until I just quit going to school.
schools provided behavioral classrooms as a matter of course, to assist kids who need coaching in personal hygiene and social skills."
"Don't sit me by the loudest kid in the class.
There was a boy in my class that must've had ADHD (severely) and he was always making noise, and touching people, and running into them. Those three things are probably at the top of my list of worst sensory issues. It seems that the teacher always sat me by him. My grades went down, because I couldn't concentrate, and my anxiety skyrocketed. It got to the point that I couldn't sleep at night, because I was so afraid of having to deal with this kid at school. He knew that touching me bothered me a lot, so he did it even more, because it was fun to him see me have a meltdown. I don't see how the teacher didn't notice all of this. I've seen this happen with my 7 yo son, too. I don't understand why the teacher can't make more of an effort to keep these kinds of boys as separate as possible from my son.
Oh, and it never even once occurred to me to ask for help with this issue. Sometimes, you have to pay attention to what 's going on with ASD kids, because they won't think to tell you about their problems. If someone would've thought to ask me, I'd probably have told them how much it was bothering me, if I could find the words, and felt comfortable talking to the person."
"Even when an autistic child is comfortable about telling something, it may still be impossible to ask the child about certain things. Often these things are information, skills or feelings the child experienced or learnt in another situation or another environment (school, home, kindergarten, club).
It is perfectly possible that if a teacher asks an autistic child about home it does not seem able to tell any or correct information. It is also possible that a child wants to tell something about school to his or her parents but simply cannot.
I'd also add in specific:
An autistic child may be perfectly able to do something in one situation and/or environment, but truly unable to perform the same skill in a different situation/environment. That everything from knowledge to learnt skills are only available to the child in certain situation is a difficulty that can come with autism."
"I wish that my teachers had realised that having hundreds of kids sitting in grouped tables, chatting away and having to cooperate was overwhelming for me. I'm willing to bet that some of my relatives (had they been young children during the 90s) would've had trouble coping with this set up too. Back in the old days it was single rows of silent desks. Back then, socialising was strictly a recreational activity.
I wish they could've realised how the school environment made it difficult for me to learn.
I wish they could have realised that my strengths (observing, analysing and recording the physical environment) were not being put to best use.
I wish that they could've realised that I was a caring person who feels deep emotions, but was socially clueless, so inadvertently offended people. I can read some facial expressions, so I wish they could've realised that I was not a completely "cold" asocial "monster".
I wish they could've realised that my out-of-sync movements during PE and dancing were not willful: I genuinely couldn't sync up with the other kids. I also felt an insatiable urge to do my own thing and develop my own style.
I wish they could've realised that I wanted to join in.
Actually, I wanted to join in and lead the activity in my own style and wanted to teach the other kids things without them telling me to "Shut up".
I genuinely wanted to be friendly and not upset people.
In fact, I was very concerned and felt very upset when I had inadvertently upset others."
"The whole choose a group or partner for a group activity was the worst.
Bullies are also a horrendous problem and a zero tolerance policy needs to be in place to deal with them. I remember being told everything I shouldn't provoke them (I didn't) to I need to stand up for myself (kinda hard when I was barely chest height). Teachers need to realize that yes some bullies have problems at home or something and act out by hurting other kids, some however are just sociopaths. There are no differences to work out (I've also been told to work out differences with bullies, seriously how stupid are some teachers) some bullies just like hurting other people and aspie or autistic kids make excellent victims for them. (I have very strong feelings about bullies)
I had one class where the teacher played music in the background, while the music was nice it was rather distracting. That might just be me though.
I actually calm down by moving, walking/pacing in particular. Trying to hold still just makes me agitated.
Just because it might take me a while to form the right words to answer a question doesn't mean I don't know the answer, or if I'm in trouble for something, that I'm lying or making a story up. I'm still working on ordering my thoughts so I can communicate properly. (I have a vague memory of being told something along the lines, don't sit there making something up, just answer the question) "
"This is a tip that goes for me:
If you are explaining something to me then ask, 'do you understand?' don't assume that my answer 'yes' means I DO understand. My hearing can only pick up certain words of speech (auditory discrimination issues) so my mind puts two and two together to get 3 most of the time! If necessary, write the thing down. This way it may be more comprehendable. Hope that helps!"
"That strong staff leadership and a sincere inclusive ethos can make all the difference.
That clear rules and guidelines can help a person know "where they stand" and what to expect.
That inconsistencies and "rules" that aren't spelled out clearly are confusing."
"That when I repeatedly said, yelled, and pleaded for them to leave me alone, that they did so instead of continuing to yell at me through my closed door. They caused so many meltdowns, rages, etc. that way. That's often an aspie's only way of expressing that they're becoming overwhelmed. It's a last-ditch effort to avoid losing control. If parents don't recognize and respect this, they will be largely responsible for the resulting "bad behavior". Parents of people with Asperger's need to learn when to back off and allow them to calm down.
People with autism frequently respond with more basic emotions than other people. Harsh tone of voice or a demanding attitude will often result in a heavily defensive response. If you want your message to be received, and to not result in the opposite effect, it is important to remain calm and polite. Whereas a non-autistic person may take a harsh tone to indicate you mean business, an autistic person generally interprets it as an attack and responds as such. This can result in an argumentative or hostile response.
People with autism frequently need to mentally prepare themselves before doing something, and also frequently have a poor concept of time. A timetable of "Now" causes stress, frustration, and anger. It is far better to give them a few minutes' warning and / or early reminders to allow them to prepare and be ready."
"The one that stands out is I wish my parents knew that just because I asked unusual questions about sex at a really young age didn't mean that they should panic and ban me from reading encyclopedias. "
"As a child, I always wished that the people who said, "You know you can always talk to me," understood that just because I didn't talk to them, didn't mean that I didn't want to talk to them. I couldn't. I had (and still have) problems organizing my thoughts and getting them out. Just be patient and I will do my best.
This one is especially for the teachers: when asked about my emotional state and I say, "I don't know," I really don't know. It's almost impossible for me to know what the heck I'm feeling and it is nearly impossible to articulate it.
Usually when I lose it, I'm blamed for my destructive behavior and never allowed to explain myself--even if I could. And never let your child feel guilty for something that was not their fault, nor let your child feel guilty for what they do not understand because that guilt will stay with them forever.
Also, most Aspies tend to have a long memory. My first memory is being in a crib and crying for someone to come to me. And then I heard my mother's voice saying, "Shut up!" To this day, I can't get over that. "
"I wish my parents knew that stimming is natural and important to me; that I need to do it."
"I recently made a list of things for my son's teacher that I wish my teachers had known. I got so tired of being told not to be a tattletale about things that were CLEARLY wrong, and I stopped and shut down with talking to my teachers altogether. "
" if I put my hands over my ears when you start whistling a song to yourself, or you want me to sing a song with you, or anything of the sort, know that maybe I just *can't* do it. It's possible that the whistling actually hurts, or that the extra auditory input of the sound is just too much. And quit tapping your pencil on the table if you want me to a) be sane and b) focus on anything else!"
"to consider face blindness and keep a 'signature' about themselves so they can be recognised and to use gesture and objects where possible and speak in bullet points."
"In a tense or stressful situation I may start to shut down. This often means I don't know how to handle or process all of the stimulus around me. Help me to see the light at the end of the tunnel and understand how I can be involved in the event."
"As a school child my world was hard enough and then I entered that huge empty echoing place, with so much noise I could not hear, I could not focus and impossible to read a blackboard if I you dare look, because if I did look up, someone laughed, made fun, yet more abusive. At times so unbearable, but no place to hide I had no choice but to endure. What the other children enjoyed and talked about, made me feel more of an alien.."
"I wish that teachers knew that I needed extra guidance. I was pretty much dropped off at school at 5 years old and expected to 'figure it all out'. That might work for some kids, but it just made the world a chaotic place for me for a few years there. In fact, what should have been done, was indeed done later when I was 9 years old... I went to a new school and one student there was asked to show me around and let me know how things worked, and where everything was. The difference that this made was like night and day. I thoroughly enjoyed my time at the new school, and excelled as a student as well.
I had a hard time making sense of the big picture as a child. I could figure out what was expected of me from moment to moment, with a little effort, but understanding how each part of my day made sense on a daily or weekly basis was impossible. A kind of tunnel vision with regard to my own life. A very narrow understanding. Experts tend to say that Asperger's children need structure, maybe these sort of difficulties are the reason.
I also wish that my parents knew that I needed personal, private time (grew up in a large family), and that noise was something I was extremely sensitive to. The home life that I had growing up was a pressure-cooker environment that made me a more anxious adult, I think."
"I wanted to have things set, and to stay the same. I did not like too much variation, fortunately perhaps in my childhood there wasn't much. Things are different today. When i was working as a teacher aide, my supervisor told me of an aspie boy who she had been helping. Technology classes at that school were taught in 'blocks' of ten lessons, then they were moved onto a new subject. For the first block, she took him into the room beforehand, introduced him to the teacher, who showed where everything was, told him what would happen, etc, he knew what to expect and the lessons went well. Unfortunately, she didn't think he would need the same when they moved on to the next block. He was so overwhelmed he spent the entire first lesson of the new subject sobbing in the corner of the classroom. Big lesson for her, and the other teachers."
"The biggest, please don't shout at me, if you do say sorry, please don't make me a spectacle, be kind to me, make me feel good about my differences not feel subnormal and less than human. Listen to me.
If just these things would have happened my younger life would have been less retched and less full of pain."
"I have difficulty answering this as I would say my difficulties emerged in my teens and further on.
I imagine (from the viewpoint of an older person) that an early diagnosis could have been helpful and I needed training not to take everything literally and to understand that authorities were just fellow human beings not enemies.
(Turning this around I suppose I wish teachers knew that I regarded them as enemies not because I was inherently nasty (although I confess I could behave that way to teachers) but because I felt they were trying to impinge on me by forcing useless information into me - I needed explanation as to why things were happening which was not of the "because I say so variety")
I failed to understand how teachers could make rules and then dislike people who told them other people were breaking the rules - did they or did they not want the rules kept, and were they or were they not responsible for enforcing them? I still find this one a bit puzzeling. I suppose nowadays they try and get buyinto rules by getting the students to work them out at the beginning of a year.
I think the most useful thing I could have been taught was not to take books literally - that I needed to prioritise what I could learn from life over what I could learn from books. I expected my life to play out like a novel and was constantly disappointed when it didn't.
I think aspie kids probably need to have time spent giving them details of different points of view."
"I wish that everyone wouldn't have made such a big deal about my eating habits. I still don't like most my food to touch, and I still eat only one item of food at a time on my plate. It's not worth hassling a kid over. I also have sensory issues with certain foods, mostly because of the way they smell."
I also wish that my parents would've taken my other sensory issues more seriously. If an autistic child is telling you that something is bothering them (that relates to one of the senses) take them seriously. Don't accuse them of being over-exaggerative."
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