http://spiritdances.wordpress.com/

I know there are many who have more seizures than I do. It is so much better for me because I am not having them everyday. The thing I want to tell is seizures are not scary for me. I know they frighten others when they see them, but for me, I don't remember. If I knew when I was going to seizure and I could communicate to someone, I would like that. I'm told that most of my seizures happen at night. It is not often that they come during the day.  I am excited that I feel better, but today I am struggling with apnea.

I am going to wrap this up, go out on the deck and hang with Beau. He is learning some new tricks. I will tell you about them soon. We have a new camera, so I will try to post some new photos soon.

Karly

If I knew what I know now, when I was a little girl, my birthdays would have been happier occasions for me. I didn't know my life could be a gift to others, especially to those who are struggling like me in a silent body, to be understood. If I had known that my lifes' story could bring an understanding to others, I would have felt more joy about being alive. I feel so joyful today, that there are those whose lives are a little better because I have put words to their experience. It has amazed me how many people have responded to my blog. It isn't a fancy one, not great to look at, it doesn't even have my music on it yet. But what I have shared, even though hard to hear, has been kindly received.

I don't think I would have been so fortunate if my mom and stepdad wouldn't have kept encouraging me to write, and my good friend Sandy who has been one of my greatest fans. I share this today, because as I sit here, I am struggling to breathe.

Part of my condition of Rett is disordered breathing. Unlike most people who don't even think about breathing, I think about it every waking moment. My body doesn't breath on its' own very easily. I turn blue so often during the day that it is a normal color for me. My hands are a deep purple right now. I'm ready to breathe normal. I wish I could. It's one of the things that keep me from enjoying my favorite activities. I am unable to control it, but my body stops breathing every couple of minutes. Sometimes I breathe normally in seconds, other times I hold my breath until I pass out. It is not scary for me anymore, but it makes others around me anxious and uncomfortable. 'It is hard to see someone turn blue ,'they say. I see my hands turn blue, but they go back to pink. When I start breathing again, I hyperventilate because my body is trying to gain more oxygen. I cannot control it: my arms flail and my legs go stiff, and I look frightened.

The reason I share this today is because we are going out on such an awesome day into the community, where I'm noticed not for being a wonderful young woman turning 23, but as someone who has a problem, and who makes their day uncomfortable.

I love life and I want to enjoy myself like everyone else. So I will try to ignore their discomfort, but I am very aware of it. It makes me even more uncomfortable. I want them to know that I am NOT who they think I am. I am out having a great birthday gift with my Mom and Gregg! It makes my life valuable to know that they are wanting to be with me in these situations helping me have a blessed life. It's not an easy life, but it is a great life.

I speak for many who are experiencing this around the world. I can only imagine what is happening in their lives today. I want to give them a huge hug.

Karly with love

When I last wrote, I had so much hope in my heart. I was expecting something life changing to take place. My Mom and Gregg and I were expecting to have our lives turned upside down. I share this because we believed it was going to happen. We were praying about it. We were trusting because the visits we had with the people making the decision and those who were advisors were very positive. Everyone who heard of this opportuntiy for our family said it was a perfect fit. We shared this with only a few because we didn't want to spoil our life changing surprise by talking about it.

As I write this everything we believed and were so confident in, has not taken place. It has been so very sad for us. If you have ever fully expected something to happen, that you could see it and it didn't take place, you will understand our grief. It was so close to being real that we felt it happening. I share this with you because the way I have had to handle this may be unique to those who are silent. I cannot process this through talking. I cannot walk or run on my own. I can't even cry. When we got the news I was so stunned, I had the hardest seizure I have ever had. I don't remember much about it, but my Mom and sister were with me. Since I have had to find a way to grieve, I have been silent here.

I am happy today because I have been asking God to take this pain and do something useful with it. He has been able to do that. I can't explain how. I have been praying so hard because this loss has been too much to bear. If you could imagine not having a way to deal with your most heart wrenching pains in your life....well, you know what I mean.

There are good things happening too. The documentary being made of my life...Daniel Kinney is the filmaker. He is a beautiful person. He is so kind and gentle and has given me the title of director. He sees himself as my servant. I can't tell you how excited I am to meet the young woman who auditioned to be my voice. She is a beautiful singer and gave me one of her cd's. There were 7 who auditioned, and Jennifer was my favoirte for my voice. I have been working on my script for some time. My piano compositions will be a big part of the documentary...how I compose, and other things about my life. Daniel is encouraging me to write lyrics to one of my pieces.

We are working with Beau (my minature horse) trying to get him to identify objects from a group of three, having him put it in a bucket. He loves to mouth things, so we decided to have his mouth get a job. He has learned a lot of things and is very smart, so we are expecting this to happen soon.

I hope you are enjoying summer.

We love the amazing chimes my mom and I found at a garden store last week. I have never heard anything so beautiful. They sound like a cathederal. Mom let me choose my favorite one. They are huge and have a rich tone when the wind catches them just right. They make me so content. We wanted to take something that was so sad and make it into something beautiful. The chimes are making smiles on our hearts.

Karly

I have been fortunate that I have a great family who loves me and has given me great strength and much courage. I am not able to do much in my life without support, so I depend on the involvement of great people. If I knew what I was able to accomplish as an adult when I was a young girl, I would not have been so discouraged with my life. If I was aware that even though I was physically limited, I would be living a great life, I would not have felt so oppressed.

I want parents of young girls with Rett Syndrome to see them through new eyes. We are not so disabled that we cannot have rich lives. I know there are many physical things to be concerned about, but don't let that stop you from dreaming big dreams about your daughters. It means so much to know that our parents have hope for us.

If we are only given opportunities that are determined by the school systems and therapists, our lives would be very small. I am able to compose music, write for my writing class, ride horses with support, train my miniature horse with my mom, and speak to groups because I have the support I need to do so.

If my Mom didin't believe in me I wouldn't have the will to live. I have a purpose for being alive. It is my God given gift to share my life with others because I love life and I know that even though I struggle in my physical body, I have a higher purpose. I believe that one of the reasons I can communicate, is because I am suppose to share my life's story with others, so that those of us who struggle to be heard and understood can be believed.

I know of many who like me, are silent, and when we get together we understand each other. We don't need to speak in an audible voice. It helps us to connect to those who are silent. I am capable of having a voice because God has given me the ability to communicate.

Any non-UK readers (and to be honest probably quite a few British readers) won't have the faintest idea who Gin is.

Well, Gin (and owner Kate) are finalists in tomorrow's Britain's Got Talent. And if there is any justice in the world they will win the £10 000 prize money and the chance to perform at the Royal Variety Performance*. So get voting!

But, my all time favourite talented animal was a horse named Clever Hans.

When talking and writing about Clever Hans the first thing animal behaviourists and historians will say is: "Oh, Clever Hans! He turned out not to be so clever after all".

Read his story and decide if you think Clever Hans was clever or not.

Clever Hans was a popular attraction in Germany, where he appeared to be able to solve maths problems, read and generally demonstrate himself to be smarter than the average horse.

The psychologist Oskar Pfungst was unconvinced, and in his role as a 1900s James Randi he undertook a scientific investigation into Hans and his alleged intelligence.

He found no fraud. But Pfungst concluded that, far from performing these intellectual tasks himself, Hans was in fact responding to subconscious clues from the people around him.

This is the point where people say Hans wasn't so clever. But I have to say I think he was robbed! He may not have been actually doing maths problems, but he was picking up on subtle clues. Similarly, Gin (much as I love him) is not actually dancing in time to the music - he's picking up on clues from his owner (who seems a pretty good dancer herself).

Anyway, Pfungst's research remains important today. Especially, in discussions of Facilitated Communication, a controversial technique sometimes used to communicate with severely disabled children.

*Although, personally, I also have a soft spot Bollywood-Michael Jackson Fusion Dance act Signature.

It was a beautiful place with lots of sun, plants, and even trees indoors. The piano was a baby grand and it sounded great. Those who spoke to me said they were inspired by my story. It gives me courage to keep trying to share my story, thoughts and my music. It seems to make a positive difference. I want to have that be my gift to the world.

I am so honored that the audience gave me a standing ovation. That has never happened to me before. That was the first time. I am overcome with joy that they were impressed enough that they honored me by standing to their feet. It wasn't because they felt sorry for me, but because they enjoyed my music and my story. It is something that most of us who live with a silent body never experience. 

I am so inspired to continue composing and sharing my story.

Here is part of the text that I wrote for the conference:

I, along with many others my age, am trying to find my purpose in this life.

I am so glad to share my story because it helps me know that my experiences can be inspiring to others.

I have many interests that have added joy and purpose to my life. Some of those are:

·        Therapeutic horseback riding

·        I train my miniature horse with my Mom

·        I love being outdoors and having picnics and going for walks on the trails-Sometimes Beau comes with us. It is fun to see peoples’ faces when they discover that he is a horse and not a large dog.

·        I am discovering a love of painting

·        I love to write about my experiences on my blog page

·        I am in the process of writing a script for my documentary. A filmmaker that has met with us is very eager to share my story

·        And of course I compose music for piano. It has changed my life to be able to share the songs that are in my heart.

·        I am interested in history & cultures other than my own

 I have Rett syndrome, but it does not define me. I may be a surprise to you because you were informed that women with Rett syndrome are not able to communicate. I am here to bring hope to others who, like me, are silent.

We were introduced to the method I use for communication when I was nine years old. I wasn’t diagnosed with Rett syndrome until I was twelve years old. Most doctors were not aware of Rett syndrome until the mid-nineties. I was born in 1985. I had Rett syndrome before most people knew about it. It has kept me from being restricted by the belief that others have about what girls with Rett syndrome can do.

It all starts with belief. Believe in me and I will fully become who I am.  I understand how limited I can be by others understanding of what I can accomplish. If you believe I can only function at a certain level, the goals and activities you have for me will limit me. I cannot prove to you that I am capable of more, if I depend on you to give me activities that will challenge me. I cannot walk away from situations that are unbearable, to demonstrate that I am not interested. For those who can walk away, they are labeled, as well.

“I have been amazed at the interest people have shown in my music. I love to share it because it gives me hope that you will believe in the silent people who though they cannot share their thoughts directly with you, have talents that have yet to be discovered.

“Music gives me a voice that others can hear. I have a way to touch people through my music. When I compose songs I feel so alive. It is from these songs that I can reach peoples hearts.”

Karly

For too much of my life, I have tried to connect with the people around me and have not been successful. I have always been able to do so with my Mom and my friend Amy, but I have not been able to do this with most others. I share this because I know there are thousands who are not able to communicate their needs, like me. I am fortunate that through FC I am able to connect with others.

I am going to be speaking tomorrow at a conference for recreational therapists. It is amazing to me that someone like me who is non-verbal is being given the chance to share my story and music with professionals. It is amazing to me because I have not been in the public view for most of my life. Only as someone who has been odd, or different. It is amazing to me that someone like me can be seen as having something to share with professionals. I am hoping that they hear what I have to say. I have my text prepared with lots of photos. I want them to see me- not Rett syndrome.I hope they hear the music I created and start to see others they work with, with new eyes. It is fun to have people interested in what I have to say. I am really eager for their questions. I will update you after tomorrow.

Karly

I want to share with you how difficult it is to depend on others for all of your needs. I am not able to meet any of my needs without assistance. What that means is that I depend on others to not only understand my needs, but to meet them. If it was so simple to find great people I wouldn't be using this space to write about it.

I am so saddened by the many people who have left my life. I wanted to have friends just like everyone else. I think most people have friends who choose to stay in their life. I am not the only adult in need of appropriate care. We have lost count of the hundreds of women who have left our lives since I was young. I am too sad to keep track. If I kept track of the losses, I wouldn't be open to the new women who come into my life. If I were too sad I would not be open.

Our family is grieving for the loss of my best friend who left for Idaho last week. It is so different without her here. I miss our chats, and being able to depend on her anticipating my needs. I am expected to trust new people immediately. They are not my Mom. They think it is natural to go into the bathroom with me and undress me, to assist me in the most intimate needs of my life. It is NOT natural. It is painfully humbling to have so much need. It is something most people do not experience unless they have a severe accident or medical condition.

I want to tell everyone that there are great people in the world who are kind, caring and capable, but there are also those in the caring role to get a paycheck. It is for them that I share this.

Your role in our lives is far too improtant to have you show up for the money you can earn. I am completely dependent on your goodness and thoughtfulness. I cannot speak to you, so you need to anticipate my needs. Rarely do you attempt to communicate with me. You do for me like you would for an animal. You can check off the list of many things to do, but you do not get to know me. It makes my day so long and full of grief for me. I don't want to have you in my life.

For those of us who are silent it is especially hard to get good care. I am expected to be patient with every new person that comes my way. They can either help me become the best person I am or hold me back by their ignorance of who I am. I think most women who fit this category choose to not get too close.  It's something that makes it easier for them.

I wish for all of us in need of care, that the world would be kinder and that human goodness, tenderness and love would be the guiding principles. I am often told that I should go into a grouphome. There I would be cared for by staff who would never interact with my family who know me best of all. I would be expected to be in an environment that includes the high needs of other adults. That would be my life. I would be expected to be content with whoever shows up to care for me. The friends I would have are those chosen to live with me by the county. We have checked it out and determined that being home with family would be ideal, but it brings so many challenges into our home.

It is hard to be the person in need of care. I watch my family stuggle to meet my needs. It is not in my power to do for myself. Our lives are open to input and scrutiny by whoever we hire to work with us. I speak on behalf of thousands of us who live in each state in our country.

Karly

It mentions in the abstract that parents are frustrated by the lack of effective treatments out there for their children and "often resort to complementary and alternative treatments (CAMs) to treat the symptoms of their child's ASD."

<Well no shit.>

It goes on to say that many of these treatments have little or no evidence of efficacy (effectiveness).

<Ditto above comment.>

This article reviews the current state of some of these CAMs, and addresses the evidence or lack thereof concerning these specific areas.

Just in case you're wondering, these are the CAMs that it covers:

• Facilitated Communication and Auditory Integrated Training
• Secretin
• Dietary Interventions
• Heavy-metal chelation
• Dolphin-assisted therapy
• Vitamin B6 interventions
• Music Therapy
• Hippotherapy and therapeutic riding

It takes its time actually getting to the meat of the article, but once it does, it divides these therapies into two distinct categories: Interventions which are not Recommended, and Interventions Considered Promising Practices (italics were added by me).

Interventions which are not Recommended

• Facilitated Communication and Auditory Integration Training

There is an organization which has taken a "significant role in evidence-based practices by taking specific positions on certain CAM interventions." That organization is the American Speech and Hearing Association (ASHA). They have recommended against both of these as interventions as evidence-based practices (or in other words they're saying that these two practices can not be touted as interventions with a background of anything like conclusive evidence to back them up -- just my interpretation).

ASHA has found that the research on these two areas don't meet the standards for scientific protocols for effectiveness (or as the author said, "efficacy"), and thus they have proposed that there need to be new protocols put in place for further research. Plus, ASHA put forth concerns that the negative consequences of misinterpreted messages when using FC outweighed any positive benefits of this practice.

In addition, only 6 studies on AIT met the criteria for inclusion in this study, but thanks to inconsistent methodologies used in these studies, no meta-analysis could be made. And of those 6, only half had positive results, while the other 3 had no results pointing towards efficacy.

<This is the kind of language used in these articles. Let me see if I can't cut it down to just the nitty gritty after this. I can't be here all day you know.>

• Secretin

Some CAMs are lacking the evidence to really make a judgment call on them. Secretin is not one of those CAMs. In fact, there have been a large number of studies done on it, and the evidence is overwhelmingly against its use.

However, this article does make one comment in passing that while secretin has not shown to be effective at treating ASDs, it does seem to have a positive effect on some people in regards to gastrointestinal problems. This effect is probably largely responsible for the positive results that many tout when pointing towards secretin as an effective intervention in ASDs.

<I can vouch for that. I know that when I feel crummy, my stimming levels shoot way up and my abilities to put up with small trivialities (like other people or . . . idk, light) are reduced significantly.>

• Dietary interventions

As of yet, although many people have individually seen positive effects of its use, dietary interventions are not supported as an effective intervention, purely based on the results from the evidence/lack thereof.

The article doesn't discount them completely though, because the very last sentence says that "larger and higher quality clinical trials are warranted."

<So get on the horn to folks you know and tell them to get some clinical trials going if you really want to see this supported!>

• Heavy-metal chelation

I must say that this section is certainly one of the longest in this entire article. As the article says, according to the Food and Drug Administration (as of 2007), there have been no inclusion of thimerosal in vaccinations since 2001, and currently the only things with mercury-based preservatives in them are flu vaccines. With that said, the link between them and autism is inconclusive still to this day.

It also describes this intervention as "potentially dangerous," and brings up the fact that there has been a death of a child as a result of this treatment. It says that until further trials have been done by the National Institute of Mental Health regarding this treatment, chelation should "not be considered an appropriate intervention to treat the symptoms associated with ASD." You can find out more about those clinical trials here.

• Dolphin-based therapy

Did you know that dolphins are used with kids who have ASDs to improve socialization and communication skills?

Who knew.

If you want to know more about this, look up the name of its creator, David Nathanson. However, several of his earlier studies have been criticized for having significant methodological flaws. Also, there is an inability to recreate the effects as seen originally. It mentions the need of further research being needed.

Interventions Considered Promising Practices

• Vitamin B6 interventions

A large number of studies have reported positive results, but many of these studies have unfortunately used poor methodologies and inadequate dependent variables (the dependent variable is what the independent variable, that which is brought in via the experiment, affects) measures. Currently, there is a lack of inconsistent evidence.

• Music Therapy as an intervention for ASD

"Music therapy involves using music and musical activities as a basis for therapeutic interventions."

The most comprehensive study done on music therapy interventions was a meta-analysis published by the Journal of Music Therapy, volume 41, issue 2, in 2004. It was done by Jennifer Whipple (I know all that not merely from the references section, but also because I'm using that article in my content analysis). The study found that all of the music therapy interventions were slightly effective in improving "one or more areas of communication and social skills development." In three other small-sample studies, positive results in response to music therapies were found regarding verbal and gestural communication skills. In addition to that evidence, other studies also showed potential as interventions for individuals with ASDs. As Whipple said however, more robust research is still needed in this area.

<Music therapy, thus far, has been the only thing even looked upon in a semi-favorable light. I can address the need for more research though. Music therapy has only been officially in existence since 1950 (although it was practiced long before that--think 1919 and before). Being that it is such a young practice, more robust research is still needed on it. Music therapy had many of its roots in veterans hospitals and consequently in geriatrics. However, there was a movie from the 1970's *goes and digs through her notes and Google* called "The Music Child" this is about music therapy and nonverbal children who are most likely autistic (this from the mouth of one of my profs).>

• Hippotherapy and Therapeutic Riding

Hippotherapy uses horses as therapy, and therapeutic riding uses riding as a goal directed recreational activity.  The majority of the studies done on this kind of therapy have primarily had positive results regarding a wide range of children with disabilities.  However, many of these studies were negatively impacted by use of poor methodologies and poor control of confounding and external variables.  More research is needed with higher quality protocols.

<I've noticed that many children on the spectrum react favorably to animals and vice versa.  Personally, horses terrify me merely because of the size difference and the fact that I have a fear of heights.  Well, really, it's not a fear of heights, but a fear of falling.  Right.  Anyways, this looks like a potentially promising therapy, should they get more conclusive results.>

As the article says later on, the unfortunate fact regarding ASDs is that far more is known about what doesn't work as compared to what does.  From this article, I'd say that music therapy has one of the highest chances of actually doing something to help.  Besides, music therapy is treatment of the whole person, not just their symptoms.

I know many of you are wondering how I type. I will share what it is like for me.  I was able to type the first day I was given a typewriter during my assessment.  The woman who did my assessment had learned from the best in the world at that time.  How she did it was she gave me picture cards, then moved up to word cards, then a small typewriter--all within the first day.  It was how she held my hand that allowed me to have intentional movements. 

I think it was because of her experience with others who are autistic that she gave me the opportunity.  My teacher and a therapist were at our home to watch the assessment.  My teacher was not in agreement with my intelligence.  She was vocal about it at school because she was certain her ideas about me were correct. 

I remember asking the assessor a question.  The first words anyone saw me type:  Can you record?  She was showing me the typewriter, and I wanted to know if it would keep the words I typed into it.  It was the first words my mom saw me type and it began a whole new life for us. 

Before I could communicate I was so oppressed, I wanted to die.  If I hadn't learned to use FC I would not have had the will to live.  I wanted to do more than share my basic needs.  I had so much more I needed to say.  It was so exciting to find a way to share who I was. 

If my mom had believed what others were saying about me, I would still be doing meaningless tasks.   My mom believed in me when all others gave her no hope.  If we let others determine who we are, we will become so much less than what we are capable of.  My mom is the one person who didn't let the beliefs of others determine who I am.

When I was 9 years old, I started communicating with support using a keyboard.  Prior to that I had no way to share my thoughts, fear, pain, or wishes.  When I started to use this method, there was so much excitement for me and my family.  When the teachers and therapists heard that I was communicating at home, they couldn't believe it.  In fact, they refused to believe it.  So for many years it was only at home that I had the opportunity to communicate.  When I got into high school, I had a teacher who believed in FC, but wasn't allowed to use it at school. 

I am sure you are wondering why so many people question FC.  When I was first learning it, there was very little controversy.  But as time went on, some things started to happen.  As people were finally given a method to communicate, they started sharing their stories.  Their stories made some people look bad.  When a person who has been silent is finally able to communicate, they feel so excited to share.  What they don't know is if they share something about being hurt by antoher person, that other person may get into trouble.  Since most people who are abusive do their deeds in secret, there is no way to find the truth.  The solution for many in this world is to take away the tool that would allow that person to communicate instead of looking at the truth.  It seems that whenever people try to study FC, they go about trying to disprove it.  For some reason, people seem to be afraid of what some folks have to say who have been silent.  I don't understand it, but I have lived it.  We are left to sort out our feelings alone in silence.  I was so sure I would be given more opportunities when I started to share my thoughts, but it was not accepted.  When we would show the teachers what I was saying at home, they were angry because it wouldn't be possible for someone with my intellect to say those things.  If typical people's voices are taken from them, they would be outraged.  But for some reason, if a person who is silent for years starts to communicate, they are expected to say only nice things.  If we feel so excited that our behaviors change, then we are a behavior problem.  If you could imagine what it was like to be in a silent body, and could find a way to share some of your basic thoughts, you would be ecstatic.  For many of us without voices, we also have physical limitations, so our freedom to show what we want and need is limited.

It helps so much to have others believe in us and have us share our own solutions.  If you have doubt about someone's intellect, they can work their entire lives trying to prove to you they are capable.  If you don't have belief in their ability, you are the one holding back their voice.  It starts with you. 

Check in again and I will explain how it works for me.

Karly

Come back soon. I will write more when I am healthy.  I am home sick today.

Today I want to focus on giving dignity to those who are overlooked.  If the world only knew what we see, experience, feel, and understand, they would be very convicted by their actions and words.  I want you to know what my friend Bill Stillman says about assuming intellect, not just in people who appear intelligent and can carry on powerful conversations with you but for those even who are labeled like me to be "profoundly retarded."  I think we will all find out one day that there is really very little difference between all of us.  We are all amazing humans living in a physical world.  God made all of us with spirits and souls and physical bodies.  Some of our bodies give us great pain and suffering even, but God is loving all of us.  I believe He is especially close to those of us who through no fault of our own struggle in this life.  If you want a profound experience with God, get close to one of His children who are not often seen by humanity. 

When we assume intellect we give as much care about what we say around someone who is nonverbal as we do in talking to a best friend.  If my mom had believed what all the professionals said about me for most of my life I wouldn't have opportunity to share today.  If she had believed that I was "profoundly retarded" like she was told the tests determined she would not have given me opportunities that have enriched my life.  I ask you to consider what you would do differently if the person you know, love, or work with really is capable of understanding all.  You would be changed and so would they.  It is not an impossible task to just believe in someone.  Why is it that typical people are encouraged to develop themselves, speak their minds, and allowed to fulfill their dreams, but those who are silent are left to do the tasks that no one would choose intentionally for themselves?  I would still be working on some of the goals that were expected of me as a young girl of sorting shapes and matching colors dozens of times over, if my mom and a wonderful teacher who believed in me hadn't put a stop to that awful existence. 

These things may be hard to hear but I beg of you to consider them.  What do you have to lose?  You will gain the respect, love, and powerful connection to the very soul of another human who isn't heard with your ears. 

Karly

Have you ever thought about what it would be like to meet someone and be expected to accept their presence in the bathroom while you are doing what you need to do in there and be comfortable with it?  It is something that adults and children who are dependent experience countless times in their lives. When others are unaware of the impact that has on our privacy and dignity, it hurts even more. If I have a caregiver that I trust, I am so grateful. It is profoundly sad when they leave. They are not easily replaced. I don't want to assume that everyone who is dependent feels like I do, but my guess is that most do. Most people are with us because they need an income.

My friend who is leaving was not so. I love her, and I am so sad to say goodbye. She is our family. I need to find a great person.

I am aware of so many people, who through no choice of their own, are left to the systems that give us services. I know they are not living a full life. It would not be the choice of any person who is free to choose their own life.

When I am able to comminicate, my wishes and dreams are taken into consideration and I can determine what I want to do with my days.

If you are reading this you may be surprised what someone like me who is non-verbal, not able to walk and is visually challenged would want for their life. Many people think that those of us who don't speak are not thinking or feeling or aware. When I am able to share my thoughts many people wonder if they are actually mine.

Thanks for checking out my blog. I am honored that you are interested in what I have to say.

Come back soon!

Karly

I will not alway be this serious folks. Sometimes I'm very funny!

Come back soon.

While this gives great hope and joy to the family of such individuals there is strong evidence to show that in many cases the resulting messages come, unintentionally, from the facilitators themselves. When controlled studies are performed where the facilitator cannot see what the subject is seeing, is unaware of information or even given false information, the answers to questions put to the subject become inaccurate. This is not to say that there are not people that can be helped by an alternative method of communication and such methods exist, for example: augmentative and alternative communication (AAC), in this the subject uses external devices independently and so there is no question that they are the source of the answers received.

This phenomenon shows that when someone desperately wants something to be true, that is when we should demand the most evidence.

Resources

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=1279809

http://skepdic.com/facilcom.html

http://www.apa.org/about/division/cpmscientific.html#4

http://www.quackwatch.org/01QuackeryRelatedTopics/autism.html

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There is a new blog on the block. Autism News Beat opened with this.

"I’ve started this site as a resource for journalists looking for accurate, evidence-based information about autism. I plan to review and comment on print and electronic coverage of autism, and interview journalists, editors, and others to gain their perspectives on this much reported but little understood story."

The second post seemed to recommend the evidence based intervention of ABA over stem cell therapy. In fact the evidence base for ABA is open to question as Michelle Dawson was quick to point out. Her blog, The Autism Crisis, is a useful source of well referenced criticisms of ABA. I suspect that Autism News Beat was probably so impressed by a news report which for once clearly rejected biomedical interventions, that they decided not to highlight the controversy surrounding  ABA. This is akin to backing Stephen Dawkins in an argument against  intelligent design while deciding not to mention his disagreements with fellow evolutionist, Stephen Jay Gould. Disputes within the evolutionary camp are of minor importance compared to the gulf that exists between us and the creationists. Similarly the differences that exist within autism science are clearly of a different order to the differences between autism science and autism woo. [Pace Ms Dawson. Despite the efforts of autism curebies to reduce it to the level of woo, behaviourism is science based.]

RDI

Another news story centres upon the death of an autistic child. Hakeem was not subjected to life threatening interventions to "cure" his autism. He was loved and accepted by  a mother who removed him to America to escape the ignorance about autism that leads people to regard it as a form of demonic possession in Senegal. Similar ignorance exists in parts of America, sometimes with tragic consequences.

Hakeem was not killed by quackery. His death appears to have been a natural tragedy. His mother was so impressed by the progress he had been making following a programme of relationship development intervention that she is returning to Senegal and mortgaging her home to set up a school based upon RDI principles to help autistic children there. I have some doubts about RDI. It comes across as evangelical and expensive. There are no independent studies to support it. But it is better than exorcism or stem cell therapy and I send good wishes to Hakeem's mother, Sabelle Jelani and to her proposed school.

PC  VERSUS FC?

Another news story centres upon Ralph Savarese, who adopted an autistic child. They apparently made great progress using facilitated communication. The media interest surrounds his book on the subject. I have not read it yet. But I am  thinking that this is yet another approach that helps some individuals but is hyped up as a solution for all individuals and falls into the abyss when these impossible claims on its behalf are dismissed.

DISABILITY RIGHTS KNOWS NO BOUNDARIES.

Leaving autism aside, two other news reports caught my eye this week. One is about accepting people with Downs Syndrome  The early years of Downs Syndrome are reminiscnt of more recent attitudes to autism. In the year of my birth, 1952, the Guardian reports that parents of Downs children were told:

'Not to worry, there are plenty of places for children like him.' And she said, 'In any case, they don't live long.'"

Attitudes have changed, as the article makes clear.

"Or perhaps, as some of these stories may show, it could be because of a slow but growing understanding that a child born with Down's syndrome today really does, perhaps for the first time, stand a chance of leading something remotely resembling a decent life."

Downs Syndrome has not changed. But attitudes have. So Downs kids can now look forward to  decent life. As a consequence parents are no longer desperately seeking amniocentesis and therapeutic abortions in the numbers they once did. The level of Downs births is now constant. The level for positive outcomes is rising. Downs children are no longer routinely sterilized. Some of them may marry or have children.

DISABLED SEX LIVES!

I have seen severely disabled people in wheelchairs go potholing, abseiling and rock climbing. Usually this involves able bodied people and a lot of rope. There is no way they could do it on their own. Sometimes it is the same with sex. But helping a severely disabled person achieve sexual fulfillment involves a far more serious risk assessment than mountaineering. So full marks to Treloars College for tackling this and the Observer for a good job of reporting it. We have nuns arranging for a prostitute to visit a young man so he have sex before he dies, couples being assisted into position and them left alone, even marriage. And what about the possible offspring of these relationships?  If the love and care that facilitated their conception is transferred to their upbringing these will be lucky children.