Belief Makers
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Belief Makers offers a wide range of ideas, insights and perspectives that we hope you will find interesting, inspiring, enjoyable and challenging.
We welcome your insights, questions, suggestions, assertions and musings.
Monday, April 12, 2010
Spit and other things, Part 1
posted by The Clarke Five
I mentioned last week that Jaedon has a new fascination with spit. He collects it in his mouth, filling up his cheeks until he has a natural fish face. He swishes it around in his mouth, making the most interesting noises. He often wants to speak, and finding his mouth full, he then hums the words. Sometimes he even tries to speak.... though it is not much clearer than humming. Sometimes he starts to giggle and spit comes trickling, or gushing out.
It was about a year ago that I first started writing about my journey in the world of loving acceptance, and the nudge that drooling was for me.
I'm fanatical about smells. My mom works in a home for people with significant physical and developmental challenges. Many of her clients are in wheel chairs, with feeding tubes. None of them speak. I visited her at work one day. One of the first things I noted was the smell. It wasn't the 'nothing' smell of an ordinary home. It wasn't the warm fragrant smell of food and other pleasantries. It wasn't even a bad smell, like garbage or poop. It was an odd smell of stale disinfectant and other cleaners. Many body fluids of various sorts were emitted throughout the day and cleanup was a steady ritual. Whenever Mummy got home in the evenings, she disrobed and took all her clothes to the laundry room, showered and washed her hair. The smell of her job was now in the laundry room.
When Jay was about 4 and still not anywhere close to being potty trained, I remember deciding that no matter what, he wouldn't smell. I am a fastidious changer of pull-ups, an over-user of wipes and all kinds of cleaning agents and essential oils. I can become discombobulated if I return home after a day away, and there is anything but the smell of childhood coming from Jay's direction.
Now, the science of pee and poop smell management I have down pat. Spit now, was totally something else.
After years of learning to see things in new and different ways, it's as if there is an argument going on in my mind. I can easily think of 3 possible wonderful things happening with Jay as he holds spit in his mouth:
It was about a year ago that I first started writing about my journey in the world of loving acceptance, and the nudge that drooling was for me.
When Jay was about 4 and still not anywhere close to being potty trained, I remember deciding that no matter what, he wouldn't smell. I am a fastidious changer of pull-ups, an over-user of wipes and all kinds of cleaning agents and essential oils. I can become discombobulated if I return home after a day away, and there is anything but the smell of childhood coming from Jay's direction.
Now, the science of pee and poop smell management I have down pat. Spit now, was totally something else.
After years of learning to see things in new and different ways, it's as if there is an argument going on in my mind. I can easily think of 3 possible wonderful things happening with Jay as he holds spit in his mouth:
- He's increasing his muscle tone
- Circulation in his mouth area is increasing so his lips are much less dry, almost pink
- He may be stimulating saliva production and this may be helping with digestion
Nonetheless, I say Forget that! Give me no spit! No fluid coming out of your mouth when you giggle. No worries about people thinking you are regressing. No internal battle with myself say I say 'are you regressing?' No worrying about people seeing and/or smelling spit and being turned off. I thought I had dissolved the fears of the future.
I'm not sure I can write much more about this matter, because it wasn't until writing this post that the connection between spit and my smells fanaticism hit me. I want to spend some time with a friend talking this one out (Iris???).
I'm glad I'm seeing this today because today I can look at my internal responses with curiosity. A few years ago, I wasn't as curious! Although sometimes I'm tempted to throw up my hands in the air and say "Shouldn't you be done with this already?", for the most part, I embrace the new realizations, and look forward to the more I discover about myself along this journey.
Labels: autism, faith clarke, parenting, smells
Friday, April 9, 2010
Criminally Clueless
posted by Teflon
Over the past couple of months, I've come to realize how few people actually know what the heck they're talking about. It's taken me a while to accept this realization as I tend to give people the benefit of the doubt (understatement) and there are so many people who are capable of conducting syntactically flawless conversation without ever having a clue as to what they've said. Nonetheless, I think it's time that we do something about it.
This Internet Thing
I was working at AT&T when the executives of the company finally decided that this Internet thing wasn't just a passing fad and that, as a communications company, they might actually need to address the burgeoning Internet market. AT&T was structured as a large bureaucracy with hords of minions and middle managers who were still reading and responding to email using paper; their secretaries would print the email, they would scribble their responses on the paper and their secretaries would type the responses.
Suddenly, everyone at Bell Labs who knew anything about the Internet was asked to educate the bureaucratic masses on what the Internet was, how it worked and what it meant to them and their customers. People gobbled up 'for dummies' books on all things Internet. Meetings were called, task forces created, and everyone started using also sorts of Internet-related words and phrases.
At one of our biggest customer conferences (where each customer represented many millions of dollars of annual business), I helped prepare a speech for one of the executives who would present AT&T's plans for Internet-based business services. Throughout her speech, she had pause to allow time for rousing applause and cheers as customers enthusiastically embraced and endorsed the company's grand vision for Internet services. As she walked off the stage, those of us who had helped her prepare congratulated her on a great presentation. She responded, "I don't know what I said, but they sure seemed to like it!"
The audience response did not go unnoticed. Before you know it, everyone seemed capable of delivering rousing speeches without a clue.
Pod Speak
As the Internet 'strategy' developed, I would attend meetings (more accurately depicted as convocations) where the agenda would bounce along like the ball at a kids' soccer match. Absurd propositions would be put forth with nary an eyelash batted. Intractable conclusions would be reached without anyone voicing an objection or pointing out the 'then a miracle occurs' steps. The business executive who had brought me into these meetings asked me to observe, but not to say anything. He would later ask me to tell him in private what I thought.
At one particularly delusional meeting, I finally raised my hand to voice a comment. The meetings were not ones in which people raised hands; instead, anyone wishing to speak would wait for dead air or simply interrupt. After a few minutes, the woman running the meeting determined that my hand would likely not descend until she asked what I had to say. In a room full of executives clad in Giorgio and Hugo, I stood up in my T-shirt and jeans, and began talking about the various conclusions that had been reached and the relative likelihood of success. I believe I might have used the phrase, "we'll have time travel before then" or something like that.
I spoke for just a few minutes providing some clarification on what was and what was not the Internet, how the business model was different than charging 20 cents a minute for a phone call, and so on. Then I sat down.
After a few moments of silence, I was thanked for my comments. The executive who had brought me in was bestowed an evil eye from the meeting's organizer, and the meeting ramped up again to full pod-speak.
The Execution
After the meeting, I stood outside the conference room taking in the imperial majesty of AT&T corporate headquarters one last time. As I stood there, one of the senior executives walked up to me and asked if I'd accompany him to his office. I said, "Uhmm... sure..." wondering if they did 'wet' work at AT&T. We walked into his office (the kind with its own bathroom and where the secretary had a secretary) and he began to ask me questions about the Internet: not convoluted, high-level questions, but basic nuts-and-bolts questions.
I answered. The more I answered, the more he asked. As we proceeded, I noticed a stack of Wired magazines on his credenza and I started to relax a bit. It seemed that he actually wanted to understand the Internet, not just to know what to say and when to say it.
We talked for about three hours after which he asked to me to attend all sorts of meetings and to speak up whenever I felt like it.
Not Everyone Was Happy
When I showed up at the next meeting, I was greeted with an interesting mix of quizzical expressions and sideways whispers. The meeting's organizer quickly approached me, but then noticed the executive who'd invited me beckoning her with outstretched palm and motioning fingers.
I had become part of the business group of AT&T and was no longer just a researcher.
Pervasive Cluelessness
Lately, I've started to notice more and more cases of aggravated cluelessness. I'm sure whether I'm simply becoming better at diagnosing what's been there all along or if there's been a significant increase.
While picking up some batteries at Radio Shack, I overheard the manager telling a customer about the new Sprint mobile phone plan. He mentioned that Sprint works everywhere that Verizon works (as Sprint has a deal with Verizon) and that the Sprint plan is much cheaper.
Since we rely on Verizon Wireless for everything from telephones to our home Internet connection (we can't get cable or DSL where we live), I asked him if the data capabilities on the Sprint phones worked with the Verizon EVDO high-speed data services. This was a question to which there were three acceptable answers: "yes", "no" and "I don't know". After five minutes of buzz words and references to 3G versus 4G, he stopped, looking at me to see if he'd satisfied my request. I told him that I'd understood everything he'd said, but was pretty confident that he'd not answered what I'd asked.
Shotgun or Rifle?
As I've learned more about autism and its treatment, I've started to realize that Pod-speak is perhaps as pervasive and insidious as it had been at AT&T. For years, there has been no foundational theory or blueprint of the physiological basis of autism; instead, treatments have been developed on a trial-and-error basis; a technique or approach is tried and changes are measured symptomatically.
In the absence of a foundational theory, if you want to start helping people right away, then trial-and-error is the way to go. However, if you're using trial-and-error where your only metrics are symptomatic, then you want to be really disciplined in attribution and tracking of what works and what doesn't.
Unfortunately, although a lot of empirical research has been conducted on the causes of autism, most of the work in autism treatment has been conducted outside the lab, or worse, by PhD's in psychology. What you end up with is fuzzy notions of what works and what doesn't, but no exacting specification of techniques and methods. It's somewhat akin to going a doctor who, not knowing exactly which pill will cure what ails you, prescribes a regimen of 100 pills to be taken daily. She knows that something about the combination works, but she can't pinpoint it.
Similarly, if someone prescribes an all encompassing and pedantic regimen designed to help you a person with autism, it's likely that they simply don't know what they're talking about it. It's not that the regimen won't work per se; it's not that they're ill-intended; it's just that they don't know specifically what works and what doesn't, so they prescribe the whole thing.
The problem is that you can end up in a situation where the burden of doing everything just so you can accidentally get to the something that's working often mitigates against doing anything.
What to Do?
I'm not sure why people seem so keen on being perceived as knowing what they're talking about, but it does seem to have reached epidemic proportions. But fear not, there are things that each of us can do to help.
First, if you ever find yourself saying something so as to sound 'smart' or to not be found out, where the easiest answer is simply to say, "I don't know", then repeat after me... I DON'T KNOW. Say it loud. Say it proud. Say it often. You'll feel better. You really will.
Second, if you ever suspect that someone is saying things that they don't fully understand or about which they're clueless, ask them about it. If they throw up the defenses, thank them for their help and move on.
Third, if you've embraced I DON'T KNOW, then you're perfectly positioned to begin learning and discovering on your own. Surely you can gather lots of data by googling and reading; however, don't confuse collecting data with drawing conclusions. Once you've read and talked and discussed, step back and build your own conclusions one step at a time. If there are missing steps, then conduct your own experiments noticing what works and what doesn't. You'll be amazed at all you can figure out on your own.
Fourth, if you really want to rely on the conclusions of someone else, then ask lots and lots of questions.
In the end, clueless is an artifact of neglect, not stupidity.
Have a thoroughly clued-in Friday!
Teflon
This Internet ThingI was working at AT&T when the executives of the company finally decided that this Internet thing wasn't just a passing fad and that, as a communications company, they might actually need to address the burgeoning Internet market. AT&T was structured as a large bureaucracy with hords of minions and middle managers who were still reading and responding to email using paper; their secretaries would print the email, they would scribble their responses on the paper and their secretaries would type the responses.
Suddenly, everyone at Bell Labs who knew anything about the Internet was asked to educate the bureaucratic masses on what the Internet was, how it worked and what it meant to them and their customers. People gobbled up 'for dummies' books on all things Internet. Meetings were called, task forces created, and everyone started using also sorts of Internet-related words and phrases.
At one of our biggest customer conferences (where each customer represented many millions of dollars of annual business), I helped prepare a speech for one of the executives who would present AT&T's plans for Internet-based business services. Throughout her speech, she had pause to allow time for rousing applause and cheers as customers enthusiastically embraced and endorsed the company's grand vision for Internet services. As she walked off the stage, those of us who had helped her prepare congratulated her on a great presentation. She responded, "I don't know what I said, but they sure seemed to like it!"
The audience response did not go unnoticed. Before you know it, everyone seemed capable of delivering rousing speeches without a clue.
Pod SpeakAs the Internet 'strategy' developed, I would attend meetings (more accurately depicted as convocations) where the agenda would bounce along like the ball at a kids' soccer match. Absurd propositions would be put forth with nary an eyelash batted. Intractable conclusions would be reached without anyone voicing an objection or pointing out the 'then a miracle occurs' steps. The business executive who had brought me into these meetings asked me to observe, but not to say anything. He would later ask me to tell him in private what I thought.
At one particularly delusional meeting, I finally raised my hand to voice a comment. The meetings were not ones in which people raised hands; instead, anyone wishing to speak would wait for dead air or simply interrupt. After a few minutes, the woman running the meeting determined that my hand would likely not descend until she asked what I had to say. In a room full of executives clad in Giorgio and Hugo, I stood up in my T-shirt and jeans, and began talking about the various conclusions that had been reached and the relative likelihood of success. I believe I might have used the phrase, "we'll have time travel before then" or something like that.
I spoke for just a few minutes providing some clarification on what was and what was not the Internet, how the business model was different than charging 20 cents a minute for a phone call, and so on. Then I sat down.
After a few moments of silence, I was thanked for my comments. The executive who had brought me in was bestowed an evil eye from the meeting's organizer, and the meeting ramped up again to full pod-speak.
The Execution
After the meeting, I stood outside the conference room taking in the imperial majesty of AT&T corporate headquarters one last time. As I stood there, one of the senior executives walked up to me and asked if I'd accompany him to his office. I said, "Uhmm... sure..." wondering if they did 'wet' work at AT&T. We walked into his office (the kind with its own bathroom and where the secretary had a secretary) and he began to ask me questions about the Internet: not convoluted, high-level questions, but basic nuts-and-bolts questions.
I answered. The more I answered, the more he asked. As we proceeded, I noticed a stack of Wired magazines on his credenza and I started to relax a bit. It seemed that he actually wanted to understand the Internet, not just to know what to say and when to say it.
We talked for about three hours after which he asked to me to attend all sorts of meetings and to speak up whenever I felt like it.
Not Everyone Was Happy
When I showed up at the next meeting, I was greeted with an interesting mix of quizzical expressions and sideways whispers. The meeting's organizer quickly approached me, but then noticed the executive who'd invited me beckoning her with outstretched palm and motioning fingers.
I had become part of the business group of AT&T and was no longer just a researcher.
Pervasive CluelessnessLately, I've started to notice more and more cases of aggravated cluelessness. I'm sure whether I'm simply becoming better at diagnosing what's been there all along or if there's been a significant increase.
While picking up some batteries at Radio Shack, I overheard the manager telling a customer about the new Sprint mobile phone plan. He mentioned that Sprint works everywhere that Verizon works (as Sprint has a deal with Verizon) and that the Sprint plan is much cheaper.
Since we rely on Verizon Wireless for everything from telephones to our home Internet connection (we can't get cable or DSL where we live), I asked him if the data capabilities on the Sprint phones worked with the Verizon EVDO high-speed data services. This was a question to which there were three acceptable answers: "yes", "no" and "I don't know". After five minutes of buzz words and references to 3G versus 4G, he stopped, looking at me to see if he'd satisfied my request. I told him that I'd understood everything he'd said, but was pretty confident that he'd not answered what I'd asked.
Shotgun or Rifle?
As I've learned more about autism and its treatment, I've started to realize that Pod-speak is perhaps as pervasive and insidious as it had been at AT&T. For years, there has been no foundational theory or blueprint of the physiological basis of autism; instead, treatments have been developed on a trial-and-error basis; a technique or approach is tried and changes are measured symptomatically.
In the absence of a foundational theory, if you want to start helping people right away, then trial-and-error is the way to go. However, if you're using trial-and-error where your only metrics are symptomatic, then you want to be really disciplined in attribution and tracking of what works and what doesn't.Unfortunately, although a lot of empirical research has been conducted on the causes of autism, most of the work in autism treatment has been conducted outside the lab, or worse, by PhD's in psychology. What you end up with is fuzzy notions of what works and what doesn't, but no exacting specification of techniques and methods. It's somewhat akin to going a doctor who, not knowing exactly which pill will cure what ails you, prescribes a regimen of 100 pills to be taken daily. She knows that something about the combination works, but she can't pinpoint it.
Similarly, if someone prescribes an all encompassing and pedantic regimen designed to help you a person with autism, it's likely that they simply don't know what they're talking about it. It's not that the regimen won't work per se; it's not that they're ill-intended; it's just that they don't know specifically what works and what doesn't, so they prescribe the whole thing.
The problem is that you can end up in a situation where the burden of doing everything just so you can accidentally get to the something that's working often mitigates against doing anything.
What to Do?
I'm not sure why people seem so keen on being perceived as knowing what they're talking about, but it does seem to have reached epidemic proportions. But fear not, there are things that each of us can do to help.
First, if you ever find yourself saying something so as to sound 'smart' or to not be found out, where the easiest answer is simply to say, "I don't know", then repeat after me... I DON'T KNOW. Say it loud. Say it proud. Say it often. You'll feel better. You really will.
Second, if you ever suspect that someone is saying things that they don't fully understand or about which they're clueless, ask them about it. If they throw up the defenses, thank them for their help and move on.
Third, if you've embraced I DON'T KNOW, then you're perfectly positioned to begin learning and discovering on your own. Surely you can gather lots of data by googling and reading; however, don't confuse collecting data with drawing conclusions. Once you've read and talked and discussed, step back and build your own conclusions one step at a time. If there are missing steps, then conduct your own experiments noticing what works and what doesn't. You'll be amazed at all you can figure out on your own.
Fourth, if you really want to rely on the conclusions of someone else, then ask lots and lots of questions.
In the end, clueless is an artifact of neglect, not stupidity.
Have a thoroughly clued-in Friday!
Teflon
Labels: all blogs, autism, empowerment, mark tuomenoksa, philosophy
Friday, April 2, 2010
Crying Games
posted by Jeannene Christie
A few months ago I did an outreach with an 8 year old boy on the autism spectrum (I'll call him Adam). One of his favorite games was to watch his volunteers and his Mom pretend to cry (and sometimes die). He was highly repetitious with this and his team wanted to know what to do with it. He didn't play these games with me but I have come across this interest a number of times. The following are my notes and suggestions on the subject. Even if you are not running a relationship based program I am curious to know how your beliefs about crying and dying show up in your day to day life.
There is a number of possible reasons why Adam wants to play these games. One main reason might simply be the exciting energy created around crying and pretending to die. When people cry, they let go and look funny and are full of emotion. This is exciting to watch. Most people probably react with extreme surprise and discomfort when asked to pretend to die! Once they get over their initial discomfort, they might then pretend to die with great gusto. All very motivating to a curious mind indeed.
My suggestion is to go ahead and continue doing what Adam wants you to do as this is an open door for interaction. He is exploring these topics and there is nothing bad or inappropriate about them. As you found out, Adam doesn't like you to change his favorite game by 'pulling back' or trying to make it 'positive'. Continuing to do this may turn it into a button push. There is no one 'right' thing to do. You can try out different things and see what happens.
Check in about how you feel about crying and dying. What are your beliefs about these topics? Quite interesting I bet an everyone has different beliefs and emotional reactions. Adam is probably really curious about all this. Remember, as facilitators, you are 'selling' beliefs to him. What are some empowering beliefs about crying and dying? Perhaps there might be some opportunities to get Adam talking about his ideas around these topics before selling him yours! His my be enlightening!
The following are some beliefs that I have about crying that I find useful:
Crying is wonderful! I am so happy I am able to cry when I want to cry. Crying is a way to communicate emotions, wants, and needs. Some people cry to get what they want. It is not easy to understand what a person wants when he or she cries. It can be helpful to encourage people to use words to get what they want instead of crying. Sometimes people just want to cry. It feels good to express myself through laughing, crying, jumping, etc. as a way to let my feelings out. Crying can be very cleansing and I usually feel better after I cry. People cry when they are sad, frustrated, angry, lonely, afraid, and when they are happy. I don't know how a person feels even when I see that they are crying.
With all these beliefs I've stated: IT IS EASY FOR ME TO BE COMFORTABLE (and even excited) about crying. This is the key.
Another point: culturally, there is already so much energy around crying and dying, you don't have to use major enthusiasm around it for Adam to be into it. Use SUPER, MEGA TONS of EXCITEMENT around things that Adam has a challenge doing such as participating in new interactive games and activities (and even slight variations of the crying / dying games).
It is not that the crying game is negative and other more typical games are positive. Everything that goes on in the playroom is an amazing learning opportunity.
Build interactions FROM his motivation of crying (versus trying to go away from it or change the game). In other words, use wherever he is to go towards what you want for him.
Make an emotion / action dice. Use a square tissue box and put a picture of someone crying on one of the sides and put pictures of people doing other actions (e.g. laughing, clapping, jumping, etc.) on the others sides. Throw the dice and do the actions together.
Take turns following each others directions. When Adam asks you to cry, do it. If he keeps asking, keep doing it and after a few times say something like: "Ok Adam, now it is your turn. I want you to....(e.g. jump, give me high five, laugh, etc.). Really encourage him strongly: "Go on Adam, I know you can do it!" CHEER HIM ON BIG TIME WHEN HE DOES.
Play a game called: Sometimes when I cry, I like to....(sing, cuddle, jump, etc.). Remember not to assume that crying means sadness.
Help Adam learn how to be a great friend to someone who is crying. After a few times of Adam asking you to cry and following his request, ask Adam to get you a tissue, a drink of water, or ask for a cuddle. If he does come to give you a cuddle, you could then say something like: "Wow, thank you Adam! You are such a nice friend. I'm going to give you a ride or a a squeeze. THIS is the time to PUMP UP YOUR ENERGY!!! You have helped to expand his repertoire of activities without moving away from the very thing he enjoys but by going into it.
There is a number of possible reasons why Adam wants to play these games. One main reason might simply be the exciting energy created around crying and pretending to die. When people cry, they let go and look funny and are full of emotion. This is exciting to watch. Most people probably react with extreme surprise and discomfort when asked to pretend to die! Once they get over their initial discomfort, they might then pretend to die with great gusto. All very motivating to a curious mind indeed.
My suggestion is to go ahead and continue doing what Adam wants you to do as this is an open door for interaction. He is exploring these topics and there is nothing bad or inappropriate about them. As you found out, Adam doesn't like you to change his favorite game by 'pulling back' or trying to make it 'positive'. Continuing to do this may turn it into a button push. There is no one 'right' thing to do. You can try out different things and see what happens.
Check in about how you feel about crying and dying. What are your beliefs about these topics? Quite interesting I bet an everyone has different beliefs and emotional reactions. Adam is probably really curious about all this. Remember, as facilitators, you are 'selling' beliefs to him. What are some empowering beliefs about crying and dying? Perhaps there might be some opportunities to get Adam talking about his ideas around these topics before selling him yours! His my be enlightening!
The following are some beliefs that I have about crying that I find useful:
Crying is wonderful! I am so happy I am able to cry when I want to cry. Crying is a way to communicate emotions, wants, and needs. Some people cry to get what they want. It is not easy to understand what a person wants when he or she cries. It can be helpful to encourage people to use words to get what they want instead of crying. Sometimes people just want to cry. It feels good to express myself through laughing, crying, jumping, etc. as a way to let my feelings out. Crying can be very cleansing and I usually feel better after I cry. People cry when they are sad, frustrated, angry, lonely, afraid, and when they are happy. I don't know how a person feels even when I see that they are crying.
With all these beliefs I've stated: IT IS EASY FOR ME TO BE COMFORTABLE (and even excited) about crying. This is the key.
Another point: culturally, there is already so much energy around crying and dying, you don't have to use major enthusiasm around it for Adam to be into it. Use SUPER, MEGA TONS of EXCITEMENT around things that Adam has a challenge doing such as participating in new interactive games and activities (and even slight variations of the crying / dying games).
It is not that the crying game is negative and other more typical games are positive. Everything that goes on in the playroom is an amazing learning opportunity.
Build interactions FROM his motivation of crying (versus trying to go away from it or change the game). In other words, use wherever he is to go towards what you want for him.
Make an emotion / action dice. Use a square tissue box and put a picture of someone crying on one of the sides and put pictures of people doing other actions (e.g. laughing, clapping, jumping, etc.) on the others sides. Throw the dice and do the actions together.
Take turns following each others directions. When Adam asks you to cry, do it. If he keeps asking, keep doing it and after a few times say something like: "Ok Adam, now it is your turn. I want you to....(e.g. jump, give me high five, laugh, etc.). Really encourage him strongly: "Go on Adam, I know you can do it!" CHEER HIM ON BIG TIME WHEN HE DOES.
Play a game called: Sometimes when I cry, I like to....(sing, cuddle, jump, etc.). Remember not to assume that crying means sadness.
Help Adam learn how to be a great friend to someone who is crying. After a few times of Adam asking you to cry and following his request, ask Adam to get you a tissue, a drink of water, or ask for a cuddle. If he does come to give you a cuddle, you could then say something like: "Wow, thank you Adam! You are such a nice friend. I'm going to give you a ride or a a squeeze. THIS is the time to PUMP UP YOUR ENERGY!!! You have helped to expand his repertoire of activities without moving away from the very thing he enjoys but by going into it.
Make characters pretend to cry and then ask them to use their words. Get silly and playful with it (e.g. "I have no idea what you want little duckie...please use your words.") Have a little dialogue with the characters about why they are crying and sell some empowering beliefs.
When Adam is ready, have a conversation about crying / dying. Talk about a time when you cried (what were you communicating?). Emphasize with passion what you learned from the situation.
Labels: autism, beliefs, crying, dying, emotions, games, jeannene christie
Thursday, April 1, 2010
Let me out of this classroom!
posted by The Clarke FiveContinuing on this theme of Jaedon's teachings....
Today, one of our new volunteers went into the playroom with Jaedon. Jaedon had just asked me for nuts and I shared with him that we didn't have any, but that I would get him some grapes. While in the kitchen, I could hear Jay in the playroom protesting vehemently, sometimes screaming, sometimes crying. As I brought the grapes up to the volunteer, I did a quick check in with her. She had not experienced Jay crying before and we hadn't yet talked about strategies to deal with crying. She shared that she felt somehow the crying was her fault. I quickly encouraged her to see crying in some different ways, told her Jay wanted nuts and we had none, gave her the grapes and left. They were together for about 45 minutes before I called her for some feedback.
Iris commented on last week's post:
Being a student about beliefs, I want to point out something you wrote above: "Initially, Jaedon seems to interact with them strongly, almost showing them how much fun their time could be. At some point, they will each get to see the powerful reflecting image too". Do you see the words "initially, almost, could, at some point". What are the beliefs that you are selling here? How come? How useful is it for you, Jeadon and your team?
As I think about the questions, the first set of thoughts are disorganized around the theme of fear. I'm no longer afraid of Jaedon's future. I am afraid that the volunteers will not continue to move themselves from discomfort to comfort as they encounter various behaviors. Jaedon is a charmer. Hardly anyone meets him without falling in love. I feel like falling in love is fleeting and I don't know if they have the stamina to stay in love. Seems like I think loving takes stamina...hmmm. I still find some behaviors challenging (like the new behavior of collecting spit in his mouth until his cheeks puff out ... followed by bursting into giggles) and am constantly reformulating the beliefs I have (he's not regressing, he's finding a way to strengthen the muscle tone in his mouth area). I am constantly widening my Platform of Acceptance. I'm afraid they won't stick with the challenge, to figure it out.
It's funny, I spent maybe 20 minutes talking with this volunteer, helping her explore some of her discomfort. After 2 sessions with Jay, she was both eager and unsure. A younger relative of hers has autism and her interactions with him are different from what I'm teaching her to do with Jay. She was uncertain of her ability to 'get it'. I think she was ready to pack it in.
Amidst the beliefs about volunteers and their tenacity, I have clarified a few anchoring beliefs. They help keep me sane while I work on everything. This idea of Jaedon being the teacher is one of those. I am definitely in the classroom. I encouraged her that if she wanted to get it, we would both take it a step at a time, and that Jaedon would help her.
Iris, I'm sure there is more here, but this is my brain dump of today. By next week, I should have taken some time to talk about/explore my spit issues and why the dickens it should be more significant to me than poop! I'll tell you what I discover!
Labels: autism, beliefs, faith clarke, parenting
Thursday, March 25, 2010
Our Volunteers in Jaedon's Classroom
posted by The Clarke Five
The story reminds me of Jaedon's teachings. Now that I'm clear on the fact that he is teaching and I am positioning myself as his student. Many of his responses mirror my internal thoughts and feelings, and give me the opportunity to explore them more deeply. As he reflects my discomfort to me, I see it more clearly.
I'm also his manager, helping other willing students have access to his lessons. This week, I had the pleasure of adding 5 new students to Jaedon's classroom. Read about my journey here. Their first goal learning to let go of any need to 'fix' Jay and to really have fun being a loving, peaceful presence in his life. Initially, Jaedon seems to interact with them strongly, almost showing them how much fun their time could be. At some point, they will each get to see the powerful reflecting image too. How will they respond? I really want to help them, guide them in this process. Yet, I feel myself go tense at the ensuing thoughts: 5 new volunteers! How will I manage? Can I teach them all? I'm realizing that these thoughts add to my confusion (some days yes! some days no!) about having a large team of volunteers working with Jay. Reframing all that in my head is such a relief. I live with the master teacher! I'm just a facilitator, a midwife in my volunteer's process. Every volunteer will go as far and connect as deeply as they each want to. While I hope they do, and I continue to look for ways to inspire them, I can take myself off the hook. I'm not making them.
I'm hopeful and excited, anticipating the next few weeks for all of us. I'm getting to practice this new way of being with Jaedon and they are getting to learn from him more directly.... I keep refining this whole volunteer training thing. Who knows what it will become next?
Labels: autism, beliefs, faith clarke, volunteers
Sunday, March 14, 2010
Back into the Playroom
posted by Iris Tuomenoksa
Last month Teflon and I were traveling. We went to the beautiful beaches of South Carolina, and we worked from distance. We enjoyed early walks on the beach to get breakfast; we worked from bookstores and little coffee shops. We met some fun, interesting people over dinner. We talked with friends at home and mostly felt in touch with the world we normally live in.I say mostly, because my two dear play friends at home in their playrooms, were not able to see, talk to or play with me for a complete month.
When we made our travel plans, I realized that my travel ideas would make an enormous impact on the daily routines of my friends. I would just disappear on them for a complete month. How to explain this change to them in a way that they would understand that I hadn't left them? That I would come back? That I would be thinking of them?
Tracking Iris
I made a plan because I wanted to help them understand that I would be gone for a while, but that I would be coming back again. I decided that I would talk with them about my upcoming travels and I wanted to give them something that would remind them of these discussions and give them a way to comprehend what was going on. Both boys are not yet at a stage where you just tell them "hey, I'm going to the beach and I'll be back in four weeks!"
I'm not sure if they yet totally understand what four weeks means, or what it means to go to the beach. I for sure do not believe they know that the closest beach around is a three hour drive, and that the beach I was going to was way, way farther.
With my computer, I created a calendar for the upcoming ten weeks. It had a little photo of me, an explanation of my going on a holiday. It showed the playroom sessions with me before I would leave and after I left in a different color than the other days. A visual representation of the calendar was hung on the wall in their playrooms for others to reference when they talked about me while I was gone. About two to three weeks before I left, I started telling my friends about my travel plans and with the help of family and other playroom friends, one cross was placed on the calendar every day.
I got an email halfway through my holiday where the mom told me that her son would wake up in the morning and say "no Iris today, no... no... no..."
I guess that my plan worked!
My First Day Back in the Playroom
I had no idea how my little friends would respond to me coming back into the playroom. One of the boys has at different times shown real anger and frustration when his dad returned from travels, and so I could see this happening with me. The other boy sometimes withdraws by staying into the bathroom when something is up for him, so I could see that happening too!
None of this happened. Instead, I was greeted with acceptance and love. The first boy looked at me as if he could not believe his eyes for at least a minute and them mostly wanted to hug and kiss me. The first two days back in the playroom he regularly checked the tattoo on my arm, as if that picture proved I was really back. The other boy showed me what an incredible vocabulary jump he had made in the area of animals and how well he could write them and easily embraced me as his play buddy!
Friendships
I am so happy to see that my little friends found ways to deal with me being gone, and that we were easily able to pick up where we'd left off. It’s funny. My friendships with these boys represent so much of what I like in friendships generally. When I see someone, I like to spend time with them in the moment, talking about things that are going on right now and enjoying each other. I am not a person that would talk half an hour about the fantastic holiday I had. I would tell you a couple of highlights and then move on to the now.In my friendships I also do not spend a lot of time about "what happened?" Instead, it is all about "how are you now", enjoying what is there in the moment. If a friend is in the middle of a challenge, I want to hear about it and find a way in which I can help. If this challenge is long gone and my friend feels good then great, let's spend our time on something else! We can go gardening, biking, running, discussing the Option philosophy, making music, or writing animal names on the chalkboard!
Happy Sunday everyone!
Labels: all blogs, autism, iris tuomenoksa
Thursday, March 11, 2010
Live Your Life!
posted by The Clarke Five
Today, I had coffee with a mom of a child with autism. I will be meeting with another mom next week tuesday and another on wednesday. I invariably meet other moms with children with ASD and I ask them if they would like to talk. They do.
Let me rewind. If I gave you $5 million to spend in the next 5 years, what would you do? If you didn't spend it, you would have to pay me back with interest or go to jail! How would you spend your days? Where would you spend your money? Now that the rent and food is covered, would you go to your current job? Since you can afford to travel, where would you go? These are a few questions I asked myself years ago, and I review them constantly. The more I think about the questions, the clearer the answer becomes. My last questions are usually something like:Do I need to wait until I have the money to do what I really want to be doing? What would I need to change today to move closer to doing these things that I really want to be doing?
I can't say that the changes were dramatic, but step by step, thinking about doing one small thing, then doing it, I find myself sharing myself and my experiences wherever I think it might help and having a blast!
Since my current schedule is a little tight (home business, home schooling, full time relationship based program for Jay), one mom said to me that she couldn't do what I do, almost as if I'm a super mommy. She was referring to a comment I made about creating additional income to fund my son's special diet, supplements, therapy and the like. I don't know what to say when people make comments that suggest I'm doing something unusual. I'm doing what I want to do. Every piece of my full life came to me like the right lotto number on the little spinning balls. It just fell right in place. I don't have to run my business or talk to parents. I get to!
This morning, on my way to an appointment, I had a clear mental picture (a vision?) of a dark skinned woman with no means, no money, no food, maybe no clean water. Her children were running all around her. One had autism. I don't know if she knew it was autism. I just know that she knew she couldn't have the same expectations of him as she has of her other kids, who have to be really good at helping themselves in these desperate times. I wondered, Can I share with her about intervention? About stimulating language? About increasing eye contact? I don't know. What I knew was that I wanted to come alongside her in her journey, offer an arm, a shoulder, whatever.
This picture isn't strange to me. I spent the first 20+ years of my life in Jamaica. There, intervention for autism (intervention for almost anything, actually) is for the minority. I remember a heart breaking story told to me by one of the 3 speech pathologists on the island at the time. She worked with an under-serviced population who were put on a list to get discounted speech therapy. When their turn came, they got 10 weeks of therapy, and were sent on their way. She told me of a day when she heard a rukus outside her office, and went outside to observe a mother severely punishing her son (I won't give details) and she asked what was happening. The mom replied that she was calling her son and he was ignoring her and not answering.
Such communities experience fear because of what they don't know and don't understand. My heart went out to the boy, but more so to the mom. If she could beat the autism out of him, her life and his would be difficult in the more typical ways. I have so many pictures of rural communities that could do with support, where kids with challenges are misunderstood and parents feel tortured.
So one step at a time, one person at a time. A connection here, a connection there. I get to network with amazing people who are passionate about helping, who encourage me and give me energy to reach out more and more. I get to run a business from my home, that hopefully, will provide enough income, so that I can organize 'help' (not sure what it would look like yet) and fund it, instead of spending my time asking people who don't have my vision to spend their money to help. I get to do that. What a life!
Enough about me. What about you? I cannot imagine the wealth of passion and desire you have inside you that could be directed somewhere? If you weren't spending all your time to make money to eat food and sleep inside somewhere warm, what would you be doing with your time? Find out. Do it. It's your life. Live it.
I can't say that the changes were dramatic, but step by step, thinking about doing one small thing, then doing it, I find myself sharing myself and my experiences wherever I think it might help and having a blast!
Since my current schedule is a little tight (home business, home schooling, full time relationship based program for Jay), one mom said to me that she couldn't do what I do, almost as if I'm a super mommy. She was referring to a comment I made about creating additional income to fund my son's special diet, supplements, therapy and the like. I don't know what to say when people make comments that suggest I'm doing something unusual. I'm doing what I want to do. Every piece of my full life came to me like the right lotto number on the little spinning balls. It just fell right in place. I don't have to run my business or talk to parents. I get to!
This morning, on my way to an appointment, I had a clear mental picture (a vision?) of a dark skinned woman with no means, no money, no food, maybe no clean water. Her children were running all around her. One had autism. I don't know if she knew it was autism. I just know that she knew she couldn't have the same expectations of him as she has of her other kids, who have to be really good at helping themselves in these desperate times. I wondered, Can I share with her about intervention? About stimulating language? About increasing eye contact? I don't know. What I knew was that I wanted to come alongside her in her journey, offer an arm, a shoulder, whatever.
This picture isn't strange to me. I spent the first 20+ years of my life in Jamaica. There, intervention for autism (intervention for almost anything, actually) is for the minority. I remember a heart breaking story told to me by one of the 3 speech pathologists on the island at the time. She worked with an under-serviced population who were put on a list to get discounted speech therapy. When their turn came, they got 10 weeks of therapy, and were sent on their way. She told me of a day when she heard a rukus outside her office, and went outside to observe a mother severely punishing her son (I won't give details) and she asked what was happening. The mom replied that she was calling her son and he was ignoring her and not answering.
Such communities experience fear because of what they don't know and don't understand. My heart went out to the boy, but more so to the mom. If she could beat the autism out of him, her life and his would be difficult in the more typical ways. I have so many pictures of rural communities that could do with support, where kids with challenges are misunderstood and parents feel tortured.
So one step at a time, one person at a time. A connection here, a connection there. I get to network with amazing people who are passionate about helping, who encourage me and give me energy to reach out more and more. I get to run a business from my home, that hopefully, will provide enough income, so that I can organize 'help' (not sure what it would look like yet) and fund it, instead of spending my time asking people who don't have my vision to spend their money to help. I get to do that. What a life!
Labels: autism, faith clarke, life, passion
Saturday, March 6, 2010
Are You in Sync?
posted by Teflon
Yesterday, I spent the day at a small conference at the Media Lab at MIT. The conference of about sixteen people brought together Artificial Intelligence researchers at MIT with practitioners who work with various forms of psychological disorder, the premise being that it's sometimes easier to learn about something when it's not working than when it is working. So, you had the AI guys, the practitioners and, um, me.
We Walk, Therefore We Think
The first speaker was a practitioner focused on child development. He gave an amazing presentation that began with the origins of man and ended with the current epidemic of childhood challenges such as ADHD and Autism. He compressed a few day's worth of presentations into just a bit over an hour speaking at a rate that required no Adderall on my part.
He explained that the reason humans developed the brains that we have is primarily due to evolutionary forces driving improved mobility in open areas (highly mobile mammals survive on the savanna while less mobile mammals don't). Our need for improved mobility led to bipedalism (walking on two feet) which in turn required significant development of our brains to manage the complex and coordinated movement of muscles defying gravity.
He went on to explain that our brains are not different because of their size, but instead, because of their structure and the structure of our broader neurological systems. The brain consumes significant resources; in order for bipedalism to work, it had to be done efficiently. If our brains were consumed providing real-time, always-on motor coordination of all the muscles required to walk or run on two feet, then bipedalism would have quickly gone the way of the duck-billed platypus.
To walk more efficiently, our bodies developed in a way that allows for independent operation of various systems and muscle groups. Rather than communicating all the time with every single muscle required to walk, the brain communicates between 10 and 15 times per second with various muscle groups effectively shutting down in between communications sessions. Efficient! To us it all appears to be continuous and fluid, but in fact it's just a sequence of discrete events (think of frames of a movie playing at about 30 frames per second).
Of course, for all this to work, everything has to be synchronized. It's no good if every time the brain wakes up to issue the next command, the muscle groups are busy doing their thing, or if the muscle groups looking for the next action find a sleeping brain. So, our neurological systems developed a clocking mechanism of sorts that keeps everything in sync, until it doesn't.
Out of Sync
The independent but synchronized operation of various components of our neurological and motor systems extends to other systems such as our sensory systems and even to communication and coordination of various independent regions of the brain. When everything is in sync, it works great; but when we loose synchronization, different challenges occur such as autism, ADHD and schizophrenia. These challenges are not attributable to a damaged brain, just to a brain that lacks synchronization and coordination (think good employees, bad management).
If a child has challenges with various forms of sensory stimuli (e.g. bright lights or loud noises or touching and hugs), it's not a problem with his his sensory receptors (his eyes or ears or skin) and it's not a problem with the regions of his brain that process the information. Instead, the problem lies in the coordination of the various receptors and the various processing centers. With poor synchronization, you get the mental equivalent of trying to walk with uncoordinated muscle groups.
Getting in Sync
So, if many challenges we face are due to poor synchronization of various systems and various regions of our brains, what do we do to improve synchronization? Essentially, we conduct activities that stimulate and challenge the systems that are out of sync (think of working on a set of weaker muscles in order to stimulate and develop them.)
For example, if a person were to experience a stroke leaving his right arm paralyzed or impaired, research has shown that the most effective treatment would involve restraining his left arm so that he can't use it. Similarly, if a child is not able to process non-verbal communications, you would want to focus on communicating (perhaps exclusively) non-verbally.
Of course we needn't take on the challenge head-on in order to stimulate development. We can work via any number of modes to stimulate growth and development. For example, there appears to be a significant relationship between postural and cognitive abilities in ADHD. Rather than working on ADHD, we could work on exercises focused on posture and mobility. It's all connected.
Celebrate
As we talked about these approaches, one of the psychiatrists brought up concerns regarding self-esteem, i.e., if we work exclusively on a child's weaknesses, won't that lead to poor self-esteem? The answer was simple. Approach all activities in a positive, enthusiastic and celebratory manner. Although the target of the activity the challenge or weakness, the manner of the activity is upbeat and happy.
Of course, I'm a neophyte who's just taken a few days of expert presentation compressed into a few hours of discussion and now compressed it into a few lines of blog. One of the books recommended at the conference is Disconnected Kids by Dr. Robert Melillo.
Happy synchronizing!
Teflon
We Walk, Therefore We Think
The first speaker was a practitioner focused on child development. He gave an amazing presentation that began with the origins of man and ended with the current epidemic of childhood challenges such as ADHD and Autism. He compressed a few day's worth of presentations into just a bit over an hour speaking at a rate that required no Adderall on my part.
He explained that the reason humans developed the brains that we have is primarily due to evolutionary forces driving improved mobility in open areas (highly mobile mammals survive on the savanna while less mobile mammals don't). Our need for improved mobility led to bipedalism (walking on two feet) which in turn required significant development of our brains to manage the complex and coordinated movement of muscles defying gravity.
He went on to explain that our brains are not different because of their size, but instead, because of their structure and the structure of our broader neurological systems. The brain consumes significant resources; in order for bipedalism to work, it had to be done efficiently. If our brains were consumed providing real-time, always-on motor coordination of all the muscles required to walk or run on two feet, then bipedalism would have quickly gone the way of the duck-billed platypus.
To walk more efficiently, our bodies developed in a way that allows for independent operation of various systems and muscle groups. Rather than communicating all the time with every single muscle required to walk, the brain communicates between 10 and 15 times per second with various muscle groups effectively shutting down in between communications sessions. Efficient! To us it all appears to be continuous and fluid, but in fact it's just a sequence of discrete events (think of frames of a movie playing at about 30 frames per second).
Of course, for all this to work, everything has to be synchronized. It's no good if every time the brain wakes up to issue the next command, the muscle groups are busy doing their thing, or if the muscle groups looking for the next action find a sleeping brain. So, our neurological systems developed a clocking mechanism of sorts that keeps everything in sync, until it doesn't.
Out of SyncThe independent but synchronized operation of various components of our neurological and motor systems extends to other systems such as our sensory systems and even to communication and coordination of various independent regions of the brain. When everything is in sync, it works great; but when we loose synchronization, different challenges occur such as autism, ADHD and schizophrenia. These challenges are not attributable to a damaged brain, just to a brain that lacks synchronization and coordination (think good employees, bad management).
If a child has challenges with various forms of sensory stimuli (e.g. bright lights or loud noises or touching and hugs), it's not a problem with his his sensory receptors (his eyes or ears or skin) and it's not a problem with the regions of his brain that process the information. Instead, the problem lies in the coordination of the various receptors and the various processing centers. With poor synchronization, you get the mental equivalent of trying to walk with uncoordinated muscle groups.
Getting in SyncSo, if many challenges we face are due to poor synchronization of various systems and various regions of our brains, what do we do to improve synchronization? Essentially, we conduct activities that stimulate and challenge the systems that are out of sync (think of working on a set of weaker muscles in order to stimulate and develop them.)
For example, if a person were to experience a stroke leaving his right arm paralyzed or impaired, research has shown that the most effective treatment would involve restraining his left arm so that he can't use it. Similarly, if a child is not able to process non-verbal communications, you would want to focus on communicating (perhaps exclusively) non-verbally.
Of course we needn't take on the challenge head-on in order to stimulate development. We can work via any number of modes to stimulate growth and development. For example, there appears to be a significant relationship between postural and cognitive abilities in ADHD. Rather than working on ADHD, we could work on exercises focused on posture and mobility. It's all connected.
Celebrate
As we talked about these approaches, one of the psychiatrists brought up concerns regarding self-esteem, i.e., if we work exclusively on a child's weaknesses, won't that lead to poor self-esteem? The answer was simple. Approach all activities in a positive, enthusiastic and celebratory manner. Although the target of the activity the challenge or weakness, the manner of the activity is upbeat and happy.
Of course, I'm a neophyte who's just taken a few days of expert presentation compressed into a few hours of discussion and now compressed it into a few lines of blog. One of the books recommended at the conference is Disconnected Kids by Dr. Robert Melillo.
Happy synchronizing!
Teflon
Labels: all blogs, autism, mark tuomenoksa
Thursday, February 18, 2010
Happy Doctor's Visit!
posted by The Clarke Five
Jaedon went to the doctor today! I was (mostly) happy and comfortable for the entire visit!! Let me give you some background so you can know how huge this is.
Jay is hypersentive to light and sound. He has NEVER tolerated doctor's intruments being used anywhere near his body, especially the ones with lights. This phenomenon did not mysteriously start with his autism diagnosis at 30 months. This started at birth. So, at 5 months old when he somehow scraped his eye ball with a finger nail, The pediatrician didn't have the privilege of actually seeing the scrape because he would not allow anyone to hold his eye lids apart to look inside his eye. Honestly, 2 adults working together couldn't get a 5 month old baby's eye lids to co-operate. The power of the human spirit with a strong intention!
Jaedon had his fair amount of suspicions....I ran around the office a bit after him, I spent several minutes cajoling him to actually walk into the medical room, quieting my anxiety with trust as I waited on him to decide, I fixed spilled brochures, took his temperature and pulse myself. I had a great time! The highlight of the visit was 2-fold:
So it continued though many doctor's visits. I became good at explaining to the doc up front "No doctor's instruments please. His ears and eyes are fine." The doc got a quick look in his throat while he was yelling IF he had no instruments in hand. As Jaedon grew, it became more dramatic. Could there be a doctor's office with no instruments on the wall? He would walk to the door, see the instruments and bolt back outside! Over the years, I have created a fair amount of anxiety associated with these visits, and do them only when threatened. I worried about the doctors, the nurses, the patients in the lobby seeing me chase him around, hearing him yelling, the children being traumatized by his yells ("Mommy, what are they doing to that boy?") I was a wreck!
A threat from the social worker got me to the doctor today. I did 3 really smart things for myself and I'm so excited that I did them! First, I changed the pediatrician. The last one didn't help my stress level at all ("Mom, we can't not look in his eye just because he doesn't like it", meanwhile, 2 burly guys are restraining my son and he is starting to look black and blue from the fight...). I found someone who has a child with autism, who also lives in our neighborhood. Secondly, I decided that no matter what, I would remain comfortable. I took my instant be present = gratitude = happiness pill and voila! I was there. I decided that no matter what Jay did, I would act in Jay's best interest, not worrying about the people around. I would talk to him and respond to him as if they weren't watching from the corner of their eyes and wondering about us. Thirdly, I decided to take the other 2 children to the doctor next week.
Jaedon had his fair amount of suspicions....I ran around the office a bit after him, I spent several minutes cajoling him to actually walk into the medical room, quieting my anxiety with trust as I waited on him to decide, I fixed spilled brochures, took his temperature and pulse myself. I had a great time! The highlight of the visit was 2-fold: - Jaedon spent about 10 minutes examining the doctor's instruments! He looked at the light, turned it every which way, flicked it rapidly from side to side, put it in his ear, I pretended to look in the ear and congratulated him for letting me.
- The doctor let him do all this!!! She didn't even blink when he whisked the gadget down and began his thorough examination. I have to admit that in that moment, I was tempted with discomfort (How much do these things cost?). Her calm helped remind me how useful it is to stay calm, though watchful, in moments like these. I love this woman!
My learnings:
- Examine a situation for unnecessary stressors and change them
- The power of a clear intention is ... powerful
- Unpleasant doctor's visits today don't mean unpleasant doctor's visits tomorrow. I can throw out the belief that all doctors visits will be horrible. Not only am I growing and changing, but so is Jay!
Are you dreading something this week? Change what you can, set a clear intention to be comfortable and believe in the possibilities.
Labels: autism, faith clarke, intention
Saturday, December 26, 2009
Everything I Know is Wrong
posted by Mark Kaufman
Lately I've been looking at a few things in my life and resetting my ideas about what I should do about them. Two sterling examples come to mind.
We have been running a part-time Son-Rise program for my son, Andy (12 years old) for about two years now. Prior to that I spent about two years moaning and gnashing my teeth and complaining to anyone who would listen that I can't help my son because I split his time with his mom (my ex) and she insists that he go to school, so I can't run a full time home program for him.
(For those of you who read Teflon's blog about miracles you may recognize this as a prime example of obsessing about what I can't do as a way of totally blocking the way for what I can do.)
Well, I'm happy to say that I got over that and started a genuine part-time Son-Rise home program for Andy with the help of the dedicated, loving and wonderful people at the Autism Treatment Center of America. (For those of you who don't know, that is the official name of the organization that is the home of the Son-Rise Program.)
Then, a few weeks ago, I realized that although I was running a program for my son that was doing him a lot of good, I could do so much more for him if I kicked up the intensity of our effort from creating a good program for Andy, creating an exciting, outstanding, no-holds barred race to the moon aimed at Andy living a whole, beautiful and blessed life of his own choosing.
I quickly realized that if I were to create this in the shortest time possible, I needed help, and for the first time I seriously considered seeking help from a company that I have helped to found, Relate to Autism. I spoke to Kat (RTA President and Director of Programs) with the idea of asking her if she could recommend someone to me that I could hire to work intensively with me to look at all aspects of our existing program, set us up and at the same time train me how to set up, run and maintain my program and develop my team to perform at peak level in the playroom.
I was overjoyed when she told me that she would take on the job herself and we moved to discussing how soon we could get started. We are currently in the process and I find that, although I possess the knowledge to effectively manage people (Thanks, Dad, for 15 years in your companies grooming to take over one day ) I don't do what I know (which means I don't really KNOW it).
We have been running a part-time Son-Rise program for my son, Andy (12 years old) for about two years now. Prior to that I spent about two years moaning and gnashing my teeth and complaining to anyone who would listen that I can't help my son because I split his time with his mom (my ex) and she insists that he go to school, so I can't run a full time home program for him.
(For those of you who read Teflon's blog about miracles you may recognize this as a prime example of obsessing about what I can't do as a way of totally blocking the way for what I can do.)
Well, I'm happy to say that I got over that and started a genuine part-time Son-Rise home program for Andy with the help of the dedicated, loving and wonderful people at the Autism Treatment Center of America. (For those of you who don't know, that is the official name of the organization that is the home of the Son-Rise Program.)
Then, a few weeks ago, I realized that although I was running a program for my son that was doing him a lot of good, I could do so much more for him if I kicked up the intensity of our effort from creating a good program for Andy, creating an exciting, outstanding, no-holds barred race to the moon aimed at Andy living a whole, beautiful and blessed life of his own choosing.
I quickly realized that if I were to create this in the shortest time possible, I needed help, and for the first time I seriously considered seeking help from a company that I have helped to found, Relate to Autism. I spoke to Kat (RTA President and Director of Programs) with the idea of asking her if she could recommend someone to me that I could hire to work intensively with me to look at all aspects of our existing program, set us up and at the same time train me how to set up, run and maintain my program and develop my team to perform at peak level in the playroom.
I was overjoyed when she told me that she would take on the job herself and we moved to discussing how soon we could get started. We are currently in the process and I find that, although I possess the knowledge to effectively manage people (Thanks, Dad, for 15 years in your companies grooming to take over one day ) I don't do what I know (which means I don't really KNOW it).
Also, I have been so immersed in my own private struggle to assume proactive leadership of Andy's program that I have spent far too little time on the meat of the program, i.e. what can we do with Andy in the playroom to help him develop as fast and as far as he is able to. I often would talk others about our program with Andy and remark that, actually, it is the adults in the room who are the limiting factor on Andy's progress. I have yet to see any of us challenge him to grow and have him be unresponsive or unwilling to take on the challenge. In fact he stretches himself well and readily, the problem is coming up with what to invite him to do next. I also realized that the way I had been running my program, it was more important to me that I be the one who recovers Andy than that he recover.
Time for me to recalibrate my thinking
I am beginning to appreciate my true talent for ignoring the obvious. Part and parcel of that is religiously avoiding asking myself obvious questions, like "If most of your time is spent trying to figure out how you can run Andy's program, how much time are you actually spending trying to figure out what Andy needs?"
And most of all, I have reassessed my conviction that I have to be the one to figure all this out. I am willing to call in outside help without feeling that I have somehow abdicated leadership of Andy's program. I have simple gone from being an under-equipped and ineffective leader to one who is in the process of implementing constructive and much needed change with the help of qualified people. Change which will re-focus our efforts to where they can do the most good for Andy.
Remember that I said TWO examples??
Okay, thanks for staying with me. Who knows, maybe I can give Mark a run for his money!
The other example that comes to mind is my long standing (and often sitting) battle with obesity. While I have lost a few hundred pounds in my life, I bounce around a lot (no pun intended).
Some time ago Mark started teasing me that if he were my diet doctor (i have one) the last thing he would want to do is advertise the fact that I'm his patient. Initially I took umbrage at these playful, albeit sincere, remarks. I felt that such criticism was unjustified since, when I actually did follow my doctor's program I lost weight well and quickly. Then I began to realize that my weight management skills were much like my people management skills. Although I know what to do, I don't KNOW what to do.
Shortly thereafter I was in the playroom with my friend Tristan, a 14 year-old young man who is on the verge of emerging altogether from his history of autism and whom I sincerely and gratefully refer to as MY Son-Rise volunteer even though I volunteer in his playroom once a week. Tristan observes a special diet to nourish and sustain himself in the best way possible given the qualities of his digestive system.
This diet has been laid out in a book by a Dr. Douglass N. Graham entitled "The 80/10/10 Diet". It is essentially a raw foods regime that maintains that the optimum food mix for the human animal is 80% carbohydrates 9mostly from fruit), 10% protein and 10% fat. I won't go into the details of the program here but heartily recommend that you buy the book and check it out if you are interested.
Since I play with Tristan on Mondays from 12 to 2 pm, I always get to see him eat his lunch, which consists of large quantities of fresh fruit such as 10 bananas at a sitting or 3 or 4 sugar baby watermelons. I have often flirted with the idea of trying this myself and Tristan and I have had many a discussion where he has proved to be a knowledgeable and enthusiastic proponent of Dr. Graham's ideas.
On the heels of my decision to shake things up in our home program, I finally decided last Monday that maybe a change would suit me well on this front as well. On Tuesday I went out and bought bulk quantities of various fresh fruits and have been reading the book and enjoying what I like to call "The Gorilla Diet". I don't know if Dr. Graham is right or if I'm just enjoying the adventure and novelty of attacking an old problem with new tools, but I'm certainly feeling great and having a good time of it.
Well, what can I say? It has been liberating and invigorating to let in the idea that my best efforts may just be wrong anyway. An old friend of mine used to say "looks like it's time for a 180 degree mid-course correction" (RIP, Andy) and I always loved the way that he said that, even if you do a complete turnaround, you're still on course.
How about you? Any long overdue U-turns in your future? Is your future now?
Love Always,
Mark
Labels: autism, mark kaufman
Wednesday, December 9, 2009
Vestibular System Activation (Part 1)
posted by Rita Gendelman
The importance of the vestibular system and its proper development cannot be emphasized enough. The vestibular system plays a critical role in our ability to be able to stand up right while safely and effectively moving through space. It is one of the very first systems to develop in utero and is fundamental to all future physical development. As human beings we are able to relate to the pull of gravity via the vestibular system and thus have power over our bodies and the surrounding physical environment.
The vestibular system as it pertains to all of the other systems in our brain plays a very similar role like a conductor to an orchestra. It is considered to be the orchestrator because it has its "fingers" or in other words neurological connections to all the other parts of the brain. Therefore all the other sensory systems (ex. touch, ears, eyes, proprioception- as it relates to body map, position, muscle force) must first match up with the messages of the vestibular systems upon taking further actions in order to function effectively.All learning in the first fifteen months of life is centered on the vestibular system development. Our ability to maintain a sense of balance while sitting, walking, running, jumping; be able to tell a difference between specific sounds of a letter; and thus understand the different words that create our language; be able to use our eyes in relationship to the movement of our bodies is highly dependent on the proper functioning of the vestibular system.
Several factors may contribute to the disturbances in the vestibular system such as:- Frequent ear infections
- Allergies
- Having been "shaken" as an infant
- Over growth of yeast
- Congenital birth defects
- Viral infections
- Lack of movement exposure in early stages of life
Children who are hyper-active (running, jumping, crashing, spinning in a predictable manner) are seeking movement to activate their vestibular system in order to help them calm down and find a sense of balance.
Children who are under-active (fidgety, move with intensity without any safety awareness, don’t have a rhythm, organization or predictability to their movement patterns) are craving movement in order to trigger their vestibular system into action and help wake up their brain. Often these children fidget, if asked to sit down, since they don’t have the adequate support of their neck and back muscle to keep up right due to insufficient communication between their muscles and their vestibular system.
Learning requires us to pay attention to the very thing, object we are learning about. A child who has poor processing with in the vestibular system will place all of their attention on triggering the vestibular system to begin sending messages to the brain in order to feel connected to his body and his environment. Because this child is fully placing attention on their bodies in an attempt to feel a level of ease and balance there will be little to no space left for the brain to take in and process new information.
Since the vestibular system plays such a critical role in the learning process it is very important to help our children provide the opportunity to activate the proper functioning of their vestibular system in order to learn and gain new skills.
In my next article I will discuss some of the ways that we can help our children activate their vestibular systems as well as discuss the importance of inter-hemispheric integration in relationship to the proper functioning of the vestibular system and how it relates to children on the spectrum.
Learning requires us to pay attention to the very thing, object we are learning about. A child who has poor processing with in the vestibular system will place all of their attention on triggering the vestibular system to begin sending messages to the brain in order to feel connected to his body and his environment. Because this child is fully placing attention on their bodies in an attempt to feel a level of ease and balance there will be little to no space left for the brain to take in and process new information.Since the vestibular system plays such a critical role in the learning process it is very important to help our children provide the opportunity to activate the proper functioning of their vestibular system in order to learn and gain new skills.
In my next article I will discuss some of the ways that we can help our children activate their vestibular systems as well as discuss the importance of inter-hemispheric integration in relationship to the proper functioning of the vestibular system and how it relates to children on the spectrum.
Labels: all blogs, autism, rita gendelman, vestibular system
Thursday, December 3, 2009
Out of Control, Part 1
posted by The Clarke FiveI woke up a few days ago feeling exhausted, panicked and physically like I had run a marathon after being a couch potato for years. I hurt everywhere, mostly in my mind, though. Let me tell you what hapenned.
Jaedon (my 11 year old overcoming autism) has been having some rough nights. Starting about a week after my grandmother's passing, he has been refusing to go to bed. Well, he has refused to go to sleep. Well, that isn't new... but he is refusing to stay quiet in his choice to remain awake well after the others are asleep. So, for the third night in a row, he is sitting up in his bed, screaming and wailing loudly. It's 2.a.m. Tears are streaming down his cheeks and I am at my wits end. I have massaged, given homeopathy, given calming teas, added extra calcium to his vitamin potion... nothing seems to have worked. I wanted to join him in the crying. As always, my anxiety has to do with not waking the other 2 kids (who are somehow still managing to be asleep in this chaos) since 3 children awake would be madness! I'm exhausted.Simonne awakens, complaining of the noise. I encourage her back to sleep and take Jaedon over to my bedroom. I don't want to awaken Isaiah who has only 3 more hours of sleep left, but I'm feeling desperate. In my room, Jaedon instructs me to turn on the light (yeah!!! Spontaneous language!) and asks for lotion. I start to give him a massage with some essential oils and I feel him relax. After a while, he decides to lie beside me and begins to get drowsy. Whoohoo! I encourage him into his bed and he stays there and is quiet!
I'm just about to settle down when Simonne comes into my room. This is very unusual, but has also happened a couple of times since my grandmother's passing. Hmmm.... Anyway, she lies down beside me, tosses and turns a bit, jumps up out of bed and I assume, runs to the bathroom. In seconds, I see her back standing at the foot of my bed. She proceeds to pee on the floor. It's almost 4 a.m.
Many activities later, including cleaning the trail of pee leading from my bedroom to the bathroom, changing clothing, etc. She is back in her bed and drifting off to sleep. Sometime after that, Zachary comes into bed beside me. I hustle him unto the toilet, then allow him to come back into my bed. He's small enough that I can sleep with him and I am now too exhausted to care who is in the bed...or who isn't, since amidst all this activity and alarm clocks ringing, Isaiah is up and getting ready for work.
So I woke up in the morning, having a similar feeling to those of the earlier years of dealing with autism.... those years when every day I wondered if I was equipped for this life I was living. I realized that the panic wasn't really about the unusual heroics of the night with Simonne and Zachary. I felt confident that soon, they would outgrow random night wakings, and would become as committed as I am to getting as much sleep as possible (or at least, not needing me to participate in their wakefulness). Although Jaedon isn't traditionally difficult at night, he does sleep much less than the other 2 children. He has periodic challenges with sleeping at nights and sometimes is very moody at nights. I wasn't confident about him outgrowing his challenges. Actually, I was petrified!
I lay in bed that morning telling myself all the warm fuzzies:
- You can't keep this up, what if Jaedon is changing again and this becomes a permanent part of life?
- Can you have a good attitude about this?
- And you want more kids??? No wonder your husband thinks that idea is crazy! You aren't even coping with the 3 you have...
Yup, those warm fuzzies. Actually, my new word for them is ANTS (Automatic Negative ThoughtS). I realize that I encourage the ants and depress myself in those situations to give me the courage and permission to do what I want to do. In this case, I wanted to have a slow day, with no-one bothering me and apparently, I thought the best way to do this was to be a grouch! Yeah ants!
So, I definitely was not believing in a benevolent universe. I wasn't feeling powerful at all. You know what I did? I'll tell you about it next week, but here's a hint: It had something to do with giving up control.
Let me know what you think. How would you think about a night like this one?
Labels: autism, faith clarke, panic
Wednesday, November 11, 2009
Autism, as it relates to the Spirit and the body
posted by Rita Gendelman
As an occupational theapist, I have been working with special needs children, especially children with autism, for the past 7 years. A large part of my treatment is geared toward helping parents gain a deeper understanding of how to help their child. During this process of training the parents I am very often confronted with questions such as "Why do you think Autism exists? What is the root of the problem? What is the best way to help my child?" I always say the answer to this question is as diverse as the number of practitioners working with children on the spectrum. However, I do hold a perspective that allows my personality and a piece of my soul to express itself as I work with each precious child.
Much research has been done in an attempt to understand the root causes of autism. Thus far no concrete results have been found to explain this phenomenon. My perspective is two fold, which binds the spiritual and the physical realm of understanding on how to best approach a child with autism. When speaking about spiritual awareness and autism I am referring to an unconditional love and total perfection for the human soul. Secondly, when working with these children, I place a lot of emphasis on the crucial role the physical body plays in our development as human beings. I would like to share an excerpt from a book called "The Soul of Autism" by William Stillman, which further defines the importance of combing the spiritual and physical realms when putting the pieces together in relationship to these special children.
"In this particular passage, my dear friend Michael, then 15 years old, discusses his perception of being in the world as an autistic, what he defines as a whole soul being in a broken body as opposed to the commonest incarnation- a broken soul, in a whole body." Page 29
The above passage perfectly underlines the perspective I hold when working with autistic children. The notion of "A whole soul" allows me to see the perfection of the child and sets forth the possibility of a deep and loving relationship in the present as well as for the future, which we will both create. Furthermore, this attitude allows me to see the child as a direct contributor to his own growth and evolution.
Now I would like to say a few words about the physical reality, which is our bodies, and its relationship to children with autism. When the body is not synchronized with the functions of the brain and there is no damage to the neurological structure present, the resulting factor is children who exhibit the behavior we have come to know as autism.
The child’s inability to relate to the body and use it efficiently and effectively becomes an underlying factor that deeply influences all other areas of development. Here is an excerpt from a book called "Smart Moves" by Carla Hannaford who further explains the importance of the brain-body connection in relationship to our function as human beings.
"Thinking and learning is not all in our head. On the contrary, the body plays an integral part in all our intellectual processes from our earliest moments in utero right through to old age. It is our body’s senses that feed the brain environmental information with which to form an understanding of the world and from which to draw when creating new possibilities. And it is our movements that not only express knowledge and facilitate greater cognitive function, they actually grow the brain as they increase complexity. Our entire brain structure is intimately connected to and grown by the movement mechanisms within our body." (Pages 15-16)
We all have our own understanding of how to best help our children. I have shared my own way and continue to gain a deeper understanding every moment that I spend with an autistic child on the best way I can nurture the human soul, which is the essence of an autistic child, who wants to fully experience the sensation of a physical world.
Much research has been done in an attempt to understand the root causes of autism. Thus far no concrete results have been found to explain this phenomenon. My perspective is two fold, which binds the spiritual and the physical realm of understanding on how to best approach a child with autism. When speaking about spiritual awareness and autism I am referring to an unconditional love and total perfection for the human soul. Secondly, when working with these children, I place a lot of emphasis on the crucial role the physical body plays in our development as human beings. I would like to share an excerpt from a book called "The Soul of Autism" by William Stillman, which further defines the importance of combing the spiritual and physical realms when putting the pieces together in relationship to these special children.
"In this particular passage, my dear friend Michael, then 15 years old, discusses his perception of being in the world as an autistic, what he defines as a whole soul being in a broken body as opposed to the commonest incarnation- a broken soul, in a whole body." Page 29The above passage perfectly underlines the perspective I hold when working with autistic children. The notion of "A whole soul" allows me to see the perfection of the child and sets forth the possibility of a deep and loving relationship in the present as well as for the future, which we will both create. Furthermore, this attitude allows me to see the child as a direct contributor to his own growth and evolution.
Now I would like to say a few words about the physical reality, which is our bodies, and its relationship to children with autism. When the body is not synchronized with the functions of the brain and there is no damage to the neurological structure present, the resulting factor is children who exhibit the behavior we have come to know as autism.
The child’s inability to relate to the body and use it efficiently and effectively becomes an underlying factor that deeply influences all other areas of development. Here is an excerpt from a book called "Smart Moves" by Carla Hannaford who further explains the importance of the brain-body connection in relationship to our function as human beings.
"Thinking and learning is not all in our head. On the contrary, the body plays an integral part in all our intellectual processes from our earliest moments in utero right through to old age. It is our body’s senses that feed the brain environmental information with which to form an understanding of the world and from which to draw when creating new possibilities. And it is our movements that not only express knowledge and facilitate greater cognitive function, they actually grow the brain as they increase complexity. Our entire brain structure is intimately connected to and grown by the movement mechanisms within our body." (Pages 15-16)We all have our own understanding of how to best help our children. I have shared my own way and continue to gain a deeper understanding every moment that I spend with an autistic child on the best way I can nurture the human soul, which is the essence of an autistic child, who wants to fully experience the sensation of a physical world.
Labels: all blogs, autism, rita gendelman
Thursday, November 5, 2009
I love birthdays!
posted by The Clarke FiveI enjoy celebrating birthdays....
They are times to look back at what was, and to chart a course for what could be. I give myself a "Happy New Year!" buzz twice each year: once on January 1 and the other on my birthday. I celebrate the children's birthdays by reflecting on how much my life has been enriched by our relationship and dreaming about the possibilities in the future.
Not so on Jaedon's last birthday. On November 25, 2008, Jaedon was 10 years old and I was close to total collapse. It was a roller coaster of an experience. I just wasn't prepared for Jaedon having an age with 2 digits. He was a pre-adolescent in age, yet still experiencing significant difficulties consistent with his diagnosis of autism. I had been running what felt like a limping Son-Rise program for about 6 years and I was exhausted. My dream of a 40+ hour program weekly had never been actualized. In fact, it was a struggle to get the program over 15 hours. Let's be real: it was a struggle to get myself in the playroom!
So I judged myself brutally for not doing 'enough' to give Jay this full time program, for not being in the playroom, for not giving enough feedback, for choosing the 'wrong' people to work with him, for not fundraising enough to afford all his interventions, for not increasing my clientele in my home business so we could afford... Whew! The load of my judgements became unbearable.
I decided to take some time to look why I was feeling so sad and burdened. I realised that our Son-Rise program had given me a lot of hope, especially at our intensive in 2003. I had set a time limit on Jay's development and had clear pictures of what he would be like as an older child. The movie I had created of what he would look like at 10 years old hadn't yet happened. I had no new pictures and was losing hope. I was choosing to feel despondent, to focus on a future that I don't want, to judge myself for it, possibly as a way to motivate myself to 'do better'. Maybe that strategy worked before (judge self, feel horrible, do anything to feel better) but long term, it is so energy sapping that there's no juice left to create any action that would result in feeling better. Daily, my thoughts and beliefs let the air out of my own balloon.
I was depleted and had to get some air. I decided to attend the Happiness Option Weekend (HOW) at the Option Institute, and took the opportunity to explore ME. If you have never been to the Option Institute, run! don't walk to the next program they have. One thing that was clear to me after the weekend, I really love and accept my son just as he is! I love the warm, free feeling of loving, of enjoying what is, instead of needing and longing for, craving even, what I thought would be. After returning from HOW, I reached out to some Son-Rise Program teachers and other parents. In one of these wonderful conversations, I got a great tip: What about spending 10 minutes every day thinking about who Jaedon is right now, and allowing myself to experience huge feelings of love and acceptance for him, right in the moment. It was a great idea! What a relief! The load of sadness and self judgement shifted I started to feel good again.I decided to go all out and let go of my need for the Son-Rise Program. I shut everything down from mid November 2008 to early January 2009. We resumed slowly, and gradually, I got back into recruiting, training, feedback, etc. Now, Team Jaedon has 4 new people and is on the grow! The most significant thing for me though has been the establishment of 2 new core beliefs:
- Jaedon does not need a 40+ hour program to be a wonderful, fascinating person that I love and enjoy thoroughly
- Jaedon is never too old for significant change and development.
That's a good segue into some significant change and development that I have seen in the past year of kinda, sorta, slightly running our program.
- Jaedon added some new words to his vocabulary - come, help, which he uses in dictatorial and insistent ways
- His spontaneous language has increased, especially around food
- He has become more mischievous and playful, almost like a tease, during interactions at home
- He said 'Daddy' spontaneously for the first time ever, while Dad was away for a business trip
- He let me cut his hair with the electric shear (a miracle to be described in another post, but trust me, very major!)
- He looks for his little brother to play with him
just to name a few.... Who knows how or why.... Maybe he was changing all along and I wasn't attuned because of my sadness. Maybe, like the Chinese Bamboo Tree, growth of the roots developing under the ground isn't seen above ground until a significant root system has developed. Does it matter, though? For me, it's just more evidence to support my core belief #2, and it's supporting mantra: Never, Ever Give Up Hope!
So, I've removed the yoke of the 'full-time' program, and in so doing, I've energized myself, so maybe I just might have that 40+ hours in the playroom. On the other hand, maybe I am running a full time program. I have a full time commitment to growing myself, and to providing a safe, supportive environment for Jaedon to live and grow in. Maybe a full time program is full time happiness, love and acceptance, and allowing the actions that come from that to flow.
So, as I prepare for November 25, 2009, I'm really excited. The sky is the limit for me, and all the kids, especially Jay. I'm growing and changing every day and so is he. This roller coaster is a thrill and I'm having the ride of my life!Labels: autism, burn-out, faith clarke, hope, son-rise
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