Tagged with " Misc. Autism Stuff"
Nov 18, 2007 - Uncategorized    3 Comments

Reposting This Autism Holiday Letter

 I posted this last year but I didn’t find it before the holidays so I wanted to pop it back up here. It might be useful for some of you this holiday season. Happy Holidays! Hope everyone has a safe Thanksgiving.

It’s long but you can tailer it to fit your needs. Someone from the autism support group emailed this to me and will really come in handy next year.
HOLIDAY LETTER TO RELATIVES TO PROVIDE INFORMATION

> ABOUT YOUR CHILD AND AUTISM

>

>

> “Dear Family and Friends:”

>

> This was written for the purpose of it being sent to relatives, friends,

and hosts of holiday gatherings that might need a crash course in what to

expect from their guest with autism. This letter is written as if the

autistic individual

> person is writing it personally.

>

> Dear Family and Friends:

>

> I understand that we will be visiting each other for the holidays this

year! Sometimes these visits can be very hard for me, but here is some

information that might help our visit to be more successful. As you probably

know, a hidden disability called autism, or what some people refer to as a

Pervasive

> Developmental Disorder (PDD), challenges me. Autism/PDD is a

> neurodevelopment disorder, which makes it hard for me to understand

> the environment around me. I have barriers in my brain that you

> can’t see, but which make it difficult for me to adapt to my

> surroundings.

>

> Thanksgiving & Christmas is one of the roughest holidays for me.

> With large crowds and holiday shopping it can be very overwhelming,

> even a bit scary. When planning a party remember that with my over

> sensitive hearing and eye sight, Christmas trees and holiday smells

> can cause me mild to severe pain or discomfort. If the noises are

> impossible to control a personal stereo with headphones set to a

> safe level for children may help drown out background noise and ease

> my discomfort.

>

> Sometimes I may seem rude and abrupt, but it is only that because I

> have to try so hard to understand people and at the same time, make

> myself understood. People with autism have different abilities: some

> may not speak, some write beautiful poetry, others are whizzes in

> math (Albert Einstein was thought to be autistic), or may have

> difficulty making friends. We are all different and need various

> degrees of support.

>

> Sometimes when I am touched unexpectedly, it might feel painful and

> make me want to run away. I get easily frustrated too. Being with

> lots of other people is like standing next to a moving freight train

> and trying to decide how and when to jump aboard. I feel frightened

> and confused a lot of the time. This is why I need to have things

> the same as much as possible. Once I learn how things happen, I can

> get by OK. But if something, anything, changes, then I have to

> relearn the situation all over again! It is very hard.

>

> When you try to talk to me, I often can’t understand what you say

> because there is a lot of distraction around. I have to concentrate

> very hard to hear and understand one thing at a time. You might

> think I am ignoring you-I am not. Rather, I am hearing everything

> and not knowing what is most important to respond to.

>

> Holidays are exceptionally hard because there are so many different

> people, places, and things going on that are out of my ordinary

> realm. This may be fun and adventurous for most people, but for me,

> it’s very hard work and can be extremely stressful. I often have to

> get away from all the commotion to calm down. It would be great if

> you had a private place set up to where I could retreat.

>

> If I cannot sit at the meal table, do not think I am misbehaving or

> that my parents have no control over me. Sitting in one place for

> even five minutes is often impossible for me. I feel so antsy and

> overwhelmed by all the smells, sounds, and people–I just have to

> get up and move about. Please don’t hold up your meal for me–go on

> without me, and my parents will handle the situation the best way

> they know how.

>

> Eating in general is hard for me. If you understand that autism is a

> sensory processing disorder, it’s no wonder eating is a problem!

> Think of all the senses involved with eating. Sight, smell, taste,

> touch, AND all the complicated mechanics that are involved. Chewing

> and swallowing is something that a lot of people with autism have

> trouble with. I am not being picky-I literally cannot eat certain

> foods as my sensory system and/or oral motor

> coordination is impaired. Don’t be disappointed if Mom hasn’t

> dressed me in starch and bows. It’s because she knows how much stiff

> and frilly clothes can drive me buggy! I have to feel comfortable

> in my clothes or I will just be miserable. When I go to someone

> else’s house, I may appear bossy and controlling. In a sense, I am

> being controlling, because that is how I try to fit into the world

> around me (which is so hard to figure out!) Things have to be done

> in a way I am familiar with or else I might get confused and

> frustrated. It doesn’t mean you have to change the way you are doing

> things–just please be patient with me, and understanding of how I

> have to cope. Mom and Dad have no control over how my autism makes

> me feel inside. People with autism often have little

> things that they do to help themselves feel more comfortable. The

> grown ups call it “self regulation,” or “stimming’. I might rock,

> hum, flick my fingers, or any number of different things. I am not

> trying to be disruptive or weird. Again, I am doing what I have to

> do for my brain to adapt to your world. Sometimes I cannot stop

> myself from talking, singing, or doing an activity I enjoy. The

> grown-ups call this “perseverating” which is kind-a-like self-

> regulation or stimming. I do this only because I have found

> something to

> occupy myself that makes me feel comfortable. Perseverative

> behaviors are good to a certain degree because they help me calm

> down.

>

> Please be respectful to my Mom and Dad if they let me “stim” for a

> while as they know me best and what helps to calm me. Remember that

> my Mom and Dad have to watch me much more closely than the average

> child. This is for my own safety, and preservation of your

> possessions. It hurts my parents’ feelings to be criticized for

> being over protective, or condemned for not watching me close

> enough. (the bold is Glen and I to other people, overprotective.) They are human and have been given an assignment intended

> for saints. My parents are good people and need your support.

>

> Holidays are filled with sights, sounds, and smells. The average

> household is turned into a busy, frantic, festive place. Remember

> that this may be fun for you, but it’s very hard work for me to

> conform. If I fall apart or act out in a way that you consider

> socially inappropriate, please remember that I don’t possess the

> neurological system that is required to follow some social rules. I

> am a unique person–an interesting person. I will find my place at

> this celebration that is comfortable for us all, as long as you’ll

> try to view the world through my eyes!

>

> *Author, Viki Gayhardt

Sep 17, 2007 - Uncategorized    No Comments

Jenny McCarthy

Jenny McCarthy has a little boy who was diagnosed with an Autism Spectrum Disorder in 2005 and she wrote a book called “Louder Than Words, A Mother’s Journey in Healing Autism” coming out on September 17th, 2007. She has several TV programs she’s going to appear on they include:

Oprah Tues Sept. 18

20/20 Fri Sept. 21

Good Morning America Mon Sept 24

The View Tues. Sept. 25

Larry King Live Wed. Sept 26

I’m going to try to catch as many of these as I can.

Apr 8, 2007 - Uncategorized    5 Comments

Oprah & The View on Autism

The other day Oprah did a show on autism and I was able to catch that one. It was good but I felt it was pretty negative, it had me crying a bit. One of the things that bothered me was that one of the mom’s said that her son “just isn’t there, she doesn’t know where he is but he isn’t there”, I just hope people know that not all people with autism are “not there”. I don’t feel like that about Adrian at all.

I really liked the way The View did their show on autism. They had families on the show with the children with autism. They did a variety of people, one was 18 and severe, one was I think 11 or so and he was “recovered”, and they had twin boys who seemed fairly severe. Toni Braxton was a guest host and her little boy was recently diagnosed with autism.

Either way I am glad these shows are doing topics on autism to get the word out there and also to let parents know they aren’t alone.

Mar 10, 2007 - Uncategorized    No Comments

Great Sign Language Site

This website is a wonderful resource for people learning and teaching sign language. They have about any word you would ever need to use and they have actual video of people doing the signs for you.

http://www.aslpro.com/

Jan 28, 2007 - Uncategorized    No Comments

Steve Carell Skit

Back in October comedy central had an autism benefit, I never even heard about it because I don’t have cable television but I was looking up autism on youtube and saw some of the skits from it. After doing a little reading about the benefit it turns out they raised over 2 million dollars, amazing! Here is a funny skit from Steve Carell.

Dec 25, 2006 - Uncategorized    2 Comments

Wow, wish I had this about 2 weeks ago….

It’s long but you can tailer it to fit your needs. Someone from the autism support group emailed this to me and will really come in handy next year.
HOLIDAY LETTER TO RELATIVES TO PROVIDE INFORMATION

> ABOUT YOUR CHILD AND AUTISM

>

>

> “Dear Family and Friends:”

>

> This was written for the purpose of it being sent to relatives, friends,

and hosts of holiday gatherings that might need a crash course in what to

expect from their guest with autism. This letter is written as if the

autistic individual

> person is writing it personally.

>

> Dear Family and Friends:

>

> I understand that we will be visiting each other for the holidays this

year! Sometimes these visits can be very hard for me, but here is some

information that might help our visit to be more successful. As you probably

know, a hidden disability called autism, or what some people refer to as a

Pervasive

> Developmental Disorder (PDD), challenges me. Autism/PDD is a

> neurodevelopment disorder, which makes it hard for me to understand

> the environment around me. I have barriers in my brain that you

> can’t see, but which make it difficult for me to adapt to my

> surroundings.

>

> Thanksgiving & Christmas is one of the roughest holidays for me.

> With large crowds and holiday shopping it can be very overwhelming,

> even a bit scary. When planning a party remember that with my over

> sensitive hearing and eye sight, Christmas trees and holiday smells

> can cause me mild to severe pain or discomfort. If the noises are

> impossible to control a personal stereo with headphones set to a

> safe level for children may help drown out background noise and ease

> my discomfort.

>

> Sometimes I may seem rude and abrupt, but it is only that because I

> have to try so hard to understand people and at the same time, make

> myself understood. People with autism have different abilities: some

> may not speak, some write beautiful poetry, others are whizzes in

> math (Albert Einstein was thought to be autistic), or may have

> difficulty making friends. We are all different and need various

> degrees of support.

>

> Sometimes when I am touched unexpectedly, it might feel painful and

> make me want to run away. I get easily frustrated too. Being with

> lots of other people is like standing next to a moving freight train

> and trying to decide how and when to jump aboard. I feel frightened

> and confused a lot of the time. This is why I need to have things

> the same as much as possible. Once I learn how things happen, I can

> get by OK. But if something, anything, changes, then I have to

> relearn the situation all over again! It is very hard.

>

> When you try to talk to me, I often can’t understand what you say

> because there is a lot of distraction around. I have to concentrate

> very hard to hear and understand one thing at a time. You might

> think I am ignoring you-I am not. Rather, I am hearing everything

> and not knowing what is most important to respond to.

>

> Holidays are exceptionally hard because there are so many different

> people, places, and things going on that are out of my ordinary

> realm. This may be fun and adventurous for most people, but for me,

> it’s very hard work and can be extremely stressful. I often have to

> get away from all the commotion to calm down. It would be great if

> you had a private place set up to where I could retreat.

>

> If I cannot sit at the meal table, do not think I am misbehaving or

> that my parents have no control over me. Sitting in one place for

> even five minutes is often impossible for me. I feel so antsy and

> overwhelmed by all the smells, sounds, and people–I just have to

> get up and move about. Please don’t hold up your meal for me–go on

> without me, and my parents will handle the situation the best way

> they know how.

>

> Eating in general is hard for me. If you understand that autism is a

> sensory processing disorder, it’s no wonder eating is a problem!

> Think of all the senses involved with eating. Sight, smell, taste,

> touch, AND all the complicated mechanics that are involved. Chewing

> and swallowing is something that a lot of people with autism have

> trouble with. I am not being picky-I literally cannot eat certain

> foods as my sensory system and/or oral motor

> coordination is impaired. Don’t be disappointed if Mom hasn’t

> dressed me in starch and bows. It’s because she knows how much stiff

> and frilly clothes can drive me buggy! I have to feel comfortable

> in my clothes or I will just be miserable. When I go to someone

> else’s house, I may appear bossy and controlling. In a sense, I am

> being controlling, because that is how I try to fit into the world

> around me (which is so hard to figure out!) Things have to be done

> in a way I am familiar with or else I might get confused and

> frustrated. It doesn’t mean you have to change the way you are doing

> things–just please be patient with me, and understanding of how I

> have to cope. Mom and Dad have no control over how my autism makes

> me feel inside. People with autism often have little

> things that they do to help themselves feel more comfortable. The

> grown ups call it “self regulation,” or “stimming’. I might rock,

> hum, flick my fingers, or any number of different things. I am not

> trying to be disruptive or weird. Again, I am doing what I have to

> do for my brain to adapt to your world. Sometimes I cannot stop

> myself from talking, singing, or doing an activity I enjoy. The

> grown-ups call this “perseverating” which is kind-a-like self-

> regulation or stimming. I do this only because I have found

> something to

> occupy myself that makes me feel comfortable. Perseverative

> behaviors are good to a certain degree because they help me calm

> down.

>

> Please be respectful to my Mom and Dad if they let me “stim” for a

> while as they know me best and what helps to calm me. Remember that

> my Mom and Dad have to watch me much more closely than the average

> child. This is for my own safety, and preservation of your

> possessions. It hurts my parents’ feelings to be criticized for

> being over protective, or condemned for not watching me close

> enough. (the bold is Glen and I to other people, overprotective.) They are human and have been given an assignment intended

> for saints. My parents are good people and need your support.

>

> Holidays are filled with sights, sounds, and smells. The average

> household is turned into a busy, frantic, festive place. Remember

> that this may be fun for you, but it’s very hard work for me to

> conform. If I fall apart or act out in a way that you consider

> socially inappropriate, please remember that I don’t possess the

> neurological system that is required to follow some social rules. I

> am a unique person–an interesting person. I will find my place at

> this celebration that is comfortable for us all, as long as you’ll

> try to view the world through my eyes!

>

> *Author, Viki Gayhardt

Dec 1, 2006 - Uncategorized    1 Comment

MET Gene Article

A single gene mutation doubles a child’s susceptibility to autism, a Vanderbilt-led research team reports.

It’s a discovery with far-reaching implications. Why? It isn’t specifically a brain gene. In fact, it affects multiple systems in the body, including immune function and gut repair. The gene in question is a variant form of a gene called MET.

This suggests that the complex set of behaviors and mental disabilities we call autism may not, as previously thought, be solely a problem with brain development. It may also be linked to subtle developmental problems throughout the body.

The study, which included Pat Levitt, PhD, of the Vanderbilt Kennedy Center for Research on Human Development, appears in the early online edition of the Proceedings of the National Academy of Sciences.

“We hypothesize that the common, functionally disruptive [MET gene variant] can, together with other vulnerability genes and [genetic] and environmental factors, precipitate the onset of autism,” Levitt and colleagues suggest.

New Autism Gene Important

Kids with autism usually seem normal at first. Then they seem to backslide, losing abilities they once had and suddenly withdrawing into their own world.

There are many theories about why this happens. Clearly, something goes wrong with normal development.

The MET gene, Levitt and colleagues note, encodes an important enzyme called the MET receptor. Among other things, the MET receptor sends out signals important for brain growth, brain maturation, immune function, and gut repair.

Many parents of children with autism report that their kids have digestive problems and haywire immune responses. It’s never been clear whether this is directly or indirectly linked to their autism.

Linking the MET gene to autism opens the door to exciting new research, notes Matthew W. State, MD, PhD, director of the neurogenetics program at Yale University. State’s editorial accompanies the Levitt team’s report.

“The possibility that a MET variant might lead to immune dysfunction and gastrointestinal disturbance along with autism-spectrum disorders is an important question to pursue and one that will likely lead to some debate,” State writes.

That’s because the first theory to link autism, gut problems, and immune dysfunction blamed these symptoms on childhood immunization with the measles/mumps/rubella (MMR) vaccine.

That theory — now rejected by all but one of the researchers who first proposed it — holds that kids who develop autism are particularly sensitive to the toxic effects of thimerosol, a form of mercury used as a vaccine preservative.

The thimerosol theory was rejected by an Institute of Medicine panel of experts. Now the MET gene may reopen investigation into the link between autism and other developmental problems.

“The very important question of whether and how gut disturbance, regression, and immunological issues may be related has been, in part, obscured by this [thimerosol] controversy,” State writes. “Hopefully, the present study will lead to additional rigorous investigations of these questions without fueling unnecessary concern regarding MMR.”**See my comment below

SOURCES: Campbell, D.B. Proceedings of the National Academy of Sciences, early online edition, Oct. 16-20, 2006. State, M.W. Proceedings of the National Academy of Sciences, early online edition, Oct. 16-20, 2006.

***Shouldn’t we be concerned? It seems like nobody knows whether or not MMR causes autism. I hate the fact when we bring this up with doctors they seem to get irritated and defensive. I don’t know what causes autism, nobody does but until they can tell me what causes it….don’t tell me what doesn’t cause it because obviously they have no idea.

Sep 19, 2006 - Uncategorized    2 Comments

Awesome Web Site to Print PECS

This is the very best web site I’ve found to print pictures for PECS. We printed a ton out for Adrian, mostly to use in the future. Click here to visit the website.
I laminated a few animal pictures to start with today. Adrian practiced cat, dog, cow, bird, & duck. Adrian actually said “duck” and “moo” today so that was really exciting!

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