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December 20, 2009

Intro to Autism Advocacy - Episode Resources

During this final episode of the year I talked about my personal experiences with advocating for individuals with autism and other disabilities.
I introduced my four steps to beginning Autism Advocacy for your self or your loved one:

  • Everybody Needs an Advocate, Sometimes
  • The LAW rules!
  • Data speaks, Emotions Reek
  • Everything is Negotiable

Great Advocacy Books
Special Needs Advocacy Resource Book: What You Can Do Now to Advocate for Your Exceptional Child's Education
Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide


Great Sites for Advocacy
Education Law Center http://www.elc-pa.org/index.html
IDEA Regulations http://idea.ed.gov/explore/view/p/,root,regs,
Internet Special Education Resources http://www.iser.com/CAadvocacy.html 


Going on Hiatus - New Shows will air February 2010!  Older shows can always be downloaded through the RSS FEED, available here. Thanks to all my listeners, guest, callers, and commentors, please send me some feedback - aut.toknow@gmail.com 


Thanks for a great first season!


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December 14, 2009

Let's Get Ready to RRRRRUUUUUUUUMMMMBBBBLLLLEEEE!!!!!!!!


This Sunday, December 20, 2009, I will be doing an episode on Autism Advocacy.  This show is for anyone who want more from their relationship with their child's school or district.  I will share info and take your questions on anything from evaluation's to transition planning. Your experiences are what make the show great, so please call in with your personal experiences of advocating for your loved one with autism.  If you have any on going problems and you want to share them on the air, call in as well. Also every show, I have a chat room set up on the www.blogtalkradio.com/aut_toknow show page.  Feel free to email me with any questions or suggestions at aut.toknow@gmail.com

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December 13, 2009

Autism And Reading - Episode Resources

December 13 Episode - We discussed Autism and Reading Instruction. Many tips and suggestions on how to engage students on the autism spectrum.  Great show.  Download the RSS feed if you missed it.
Resources Mentioned during show
Overcoming Dyslexia

Guest:
Dr. Vicki Parker - Learning Rx Charlotte, NC

Autism A-Z
NET (Natural Environment Training) - interventions that take place in the child's natural environment as opposed to a structured, artificial setting.
http://www.behavioralconsultant.org/id70.html

Focus on Foundation
Autism Network International - http://www.autreat.com/

What's Going On
Early Intervention Works for Kids with Autism - http://www.google.com/hostednews/ap/article/ALeqM5gn9z7lYllFbxgKrijmhN7JrSagKgD9C9L3H80

Opening Music

  



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November 18, 2009

Bringing Peace into the Holiday Season, by Sensory Interior Designer, Carolyn Feder

Carolyn is a past guest on You Aut to Know! Check out the episode here.



As soon as a few leaves start turning colors, wonderful images and sensations
start forming in my mind. I can practically feel the crispness in the air and imagine the smell of wood-burning fireplaces. The thought of sweet treats
makes my mouth water in anticipation. I am ready to put on my special sweater and floppy slippers. Once my favorite music is playing in thebackground and the scented candles are lit, I feel inspired and eager to welcome the holiday season.


All my wrapping paper, bows and shiny decorative items will come out of the
box so I can spread them all on the floor. Thank goodness we bought all those
flickering lights on sale last year. The old ones got so tangled, we had to throw them away. I find myself smiling when I sip some hot chocolate with extra marshmallows. As I bite into a freshly baked gooey cookie bar with crunchy walnuts, I look at it all, in wonder.


Molly experiences the holiday season differently from her mom, especially
when she keeps making her put on that uncomfortable sweater. It has all kinds
of bumps and those crazy socks with the stripes.....They have so many knots
from the yarn changing colors that Molly pulls them off as soon as they go on.


The loud music playing over and over again is hurting her ears badly and those
scented candles aren’t making things any easier. The crunching of the cellophane and wrapping paper is so sharp, her skin hurts just looking at it. Molly keeps turning the lights off to make all those loud colors, jiggly shapes and shiny things go away. “At least the horrible snake with blinking spots won’t come out of his cave for a while”.


The scent of hot chocolate coming from the kitchen has a calming effect on
little Molly. Except that once those lumpy~ spongy~ white~ icky things touch her tongue, she will spit them out. The rocks in the bricks are too spiky and now it all tastes very brown. She throws them as far as she can. The soothing moment has come and gone in an instant. All she can do is scream back at all the things that are hurting her. The next time her mommy says, “Let’s go shopping!”, you can be sure Molly will be hiding under the bed hoping she’s never found.


Things tend to go from bad to worse as the holidays approach for those, who
like Molly, cope with sensory integration dysfunction. Holidays for some are
nostalgic, warm and comforting, but for others it’s traumatic at best. Even
those who love the sights and sounds of the holidays can become overwhelmed in stores by the constant influx of holiday music, decorations and lights.


By simplifying and reducing scents, sounds and sights, you will allow the
intended peaceful season to enter your life. Adjusting things at home will
make a tremendous difference for everyone, especially those affected by
sensory irritants.


Create A Sanctuary
Music playing, fireplace crackling, kids playing, people talking, pots and
pans banging, before you know it, your house quickly reaches the highest
note on the scale and there is no place to hide.
Our solution is creating a ‘quiet room’ this season, a peaceful place
where one can get away, relax and re calibrate. Play soft music or listen
to the muffled sounds of joy behind the closed door. Avoid any holiday
related decor in this room, set it up as a visual spa by having low lights,
gentle colors and comforting textures including a soft blanket to snuggle
up in. Make this a nurturing space for those who need to get away from
all the hustle and bustle.


Unexpected Sensory Irritants
For those with sensory integration issues, the fewer scents, sounds and sights
the better. Stimulus is processed differently and uniquely. Bright colors and
patterns may be perceived to have loud sounds, textures may create pain.
So imagine how the traditional decor translates for some. Since a fireplace
produces mesmerizing shapes, sounds, lights and scents, let that substitute
the need for flickering lights, overflowing decorations and perfumed potpourri.


It’s All In The Packaging
Awareness of holiday irritants includes gifts themselves and their presentation.
Purchase toys with pleasurable textures, less plastic, flashing lights and
eliminate sound effects. That alone will prove helpful in maintaining a peaceful
environment. To complete this gentle experience, use paper bags as wrapping
paper with the brown side seen on the outside. Tie the packages with
non~shiny, subdued colored ribbon. It will only require a simple pull to reveal
the gift inside, no ripping or tearing sounds. For a fun craft later, the paper can
be used to draw or paint on once the novelty of the gifts wears off.


Contact Info:
Carolyn Feder is the founder and owner of Sensory Interior Design.
By combining her space organization and interior design techniques,
she creates spaces that get you in touch with inner peace and focus year round.


For more information about consultations, lectures, workshops and coaching,
visit sensoryinteriordesign.com or email sensoryinteriordesigner@yahoo.com.



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I may be paranoid, but not an android.....

This post was originally going to be a rant.  But after about 20 minutes of ranting I felt that I was being a little paranoid. One of my greatest fears of writing a personal blog about my life and my family was that someone would take something I wrote or said personal.  The internet can be a cruel place where its easy for people to hide behind user names and identities while passively telling someone off. I was reading someone else's blog today and I was wondering "is this person talking about me?"  Maybe he/she was, maybe not, I don't know.  I just felt a little paranoid about it all.  One of my greatest gifts is my empathy for others but the negative aspect of that is over sensitivity.  Its a daily balance, but what is life, if not for growth. So, I decided to still publish the post, because its one of the most honest things I have written.  Enjoy the paranoia!

I consider myself a nice person.  Sometimes a little too nice.  I have taken a lot crap from people who assume they know something about me and my life.  I decided a year and half ago to share my experience with autism in order to help other parents avoid the crap that has been dealt to me.  No agenda, no delusions of grandeur, no other purpose for presenting my story other than to help parents get the services they need. Mine has been the experience of misinformation.  You see, I realized early on that many individuals out here don't really give a damn about my family or my families experience.

Oddly enough for all the opinions out there, people are very touchy.  I find the autism community in general to be one of the most sensitive around.  I get it.  Its personal.  I know because I am the first one to tell someone off who dares look at my children wrong.  Oh and if I happen to be talking to people who aren't "autism aware" and they say something even remotely bigoted about the autism epidemic, you better believe I set them straight.
My number one rule in dealing with opinions is;
Recognize the real enemy - I don't criticize other parents.  I don't go there.  Its not my place. What do I look like sitting her writing or talking about other moms and dads, who the hell am I to judge someones experience? I am a card carrying member of the golden rule, I don't want it done to me I don't do it to others.  I don't criticize individuals on the spectrum - how can I claim to be some sort of proponent for inclusion and uniting the community if I can't get along with the individuals who actually have autism.  I describe what has been said to me or what I have witnessed, but I never, never assume I could ever know what is in someones heart and mind.  If they choose to share it with me so be it.  The real enemy is callousness and insensitivity.  That is who I want to fight with and do at least once a week.
Many people like to talk.  Talk talk talk talk talk.  People like to talk about themselves and their experiences and their opinions and they like to think they know something about someone else, but they don't.  These same people can't even begin to speculate as to what my family has gone through or what a typical crazy day in the life of us entails.  I get pissed off because I put myself out here in the blog world and on internet radio, because I get tired of seeing the same faces talking about autism, the same faces answering questions about autism, the same faces directing the dialog on autism.  The faces don't look like me and they certainly don't share my story.   Its not all good, its not all bad, it certainly isn't easy.  I am sorry if I have offended anyone in my quest to bring some different aspects about families and autism to the table.  Get over it.  I have.  My life will not be like anyone else's and I will continue to talk and share my personal opinions.  Maybe I'm paranoid and no one really cares what I have to say, but as a little variation on the well known saying goes, just because I am paranoid doesn't mean no ones talking about me.
For those who love the song...

November 15, 2009

How do I discipline my child with autism .... show resources

What a great and informative show!  If you missed it you must check it out, great advice and tips for any parent. Unfortunately we didn't get discipline, isolation, depression and other things I wanted to ask, but Maggie will be back again.


Focus on Foundations
Friends of Autism - grants up to $500


Autism A-Z
J - Joint Attention - the process by which one alerts another to a stimulus via nonverbal means, such as gazing or pointing. For example, one person may gaze at another person, and then point to an object, and then return their gaze back to the other person. In this case, the pointing person is "initiating joint attention" by trying to get the other to look at the object. The person who looks to the referenced object is "responding to joint attention." Joint attention is referred to a triadic skill, meaning that it involves two people and a object or event outside of the duo. It is well documented that infants display both types of joint attention at 9 months of age.  - Wikipedia


In the News
Study done on mothers of adolescents and adults with autism finds, "Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress."


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November 8, 2009

Overlooking the Obvious, Sensory Designing for the Autism Spectrum - Resource List

Guest



Carolyn Feder, TBAE & TAID
Registered Interior Designer
http://sensoryinteriordesign.com/



Focus of Foundation
First Hand Foundation - First Hand Foundation is a nonprofit organization that helps children with health-related needs when insurance and other financial resources have been exhausted. Our mission is to directly impact the health status of a young life. Since 1995, First Hand has assisted more than 85,000 children in 66 countries around the world.


Autism A - Z
Inclusion



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November 5, 2009

Including Aspergers with Autism


 The New York Times recently printed an article about the diagnosis of asperger syndrome and how the editors of the DSM V(Diagnostic and Statistical Manual of Mental Health Disorders, version V or 5) are considering having one broad diagnosis of autism that will include it as well as PDD-NOS(Pervasive Developmental Disorder-Not Otherwise Specified) and High Functioning Autism.
This is a step in the right direction. For years there has been an underlying division between classics and aspies, this is not usually verbalized, but as a parent I have noticed it from other parents as well as teachers I have come in contact with.

Most people I meet generally consider asperger's to be autism anyway. Usually they have never seen someone with severe autism. One reason is because people who have children that are severely affected do not come out. Their children are in special programs or homes. I also credit this to the media focus on the what I like to call the "cuter side of autism," you know; the precocious, hyperlexic, mini genius portrayal of autism that tends to exclude some of the other aspects that many parents may deal with like; feces smearing, clothing stripping, aggression, regression and elopement.

I also notice that non verbal individuals and those with more challenging behaviors are assumed to be mentally retarded and uninstructable. Many of the supplementary programs and groups tend to be more open to those who are verbal and have less challenging behaviors. My son has been rejected from groups that claim to work with kids with autism. How is that? They only work with kids who are verbal.

On the other hand people diagnosed with aspergers have to prove their disability because of their high functioning. Social awkwardness and anxiety is hard prove particularly if you have a great capacity to learn and can adequately communicate.

Parents are just as biased as the greater community. There are some parents who do not want their asperger children to be associated with the "other" autistics even going as far as not using the autism spectrum to describe their child. I find all of this to be unsettling. Because my kids span the spectrum, I can tell you a diagnosis is a label. It does no more to solve the problems or answer the questions, its just different behaviors. Will it be easier for my daughter to fit in because she will be able to hold a conversation with others versus my son who is non verbal? Yes, but what then happens when she starts crying inappropriately because she misinterpreted what someone was saying to her? Won't people still think she is just as weird as my son who likes to yell up and down the aisles at the grocery store?
I focus on changing societies perception of autism and creating meaningful inclusion in the community. Therefore it will not matter if you have Asperger's, PDD or Autism, you can still have a meaningful life in a place that accepts you for who you are Uniting the diagnosis is one small step to getting people to focus on more on functioning and behavior and less on labels.

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November 3, 2009

What really goes on behind the scenes of an IEP meeting? You might be surprised.

Listen to a clip from my interview with author and former special educator Jack E. George, where he lets me in on what goes on behind the scenes at IEP meetings. To see the clip click on the title of the post and to hear the entire interview, click on the blogtalkradio.com player to the right.

October 28, 2009

If my job is the rock, does that mean child care is the hard place?


I frequently get calls from mother's who find themselves between a rock and a hard place.  Here is the scenario; you have a new job after being unemployed or underemployed and your previously solid child care arrangement has just come undone the day before your new job starts.  Or, your child care center has just informed you that they can no longer accommodate your child because (insert excuse here).  What makes these situations extremely challenging is that your child is diagnosed with autism and you know that finding a new arrangement will take an act of God.  What do you do?
Below, I have compiled a few possible suggestions:
1. Consider a home health aide
Home health aides are typically nurses that you can utilize through a home health aide agency.  In order to get this service you will need your doctor to write a letter of medical necessity for your child and submit this to your insurance agency.  Different rules may apply in other parts of the country, but a good place to start is How to Choose a Homecare Provider and Pediatric Care.  This a Pennsylvania site, but the info is general and informative.
2. Add recreation and social skills programs to your childs IEP
Education is not the only purpose of your child's Individual Education Program (IEP).  As your children get older they may age out of a traditional daycare setting yet still not be able to stay home by themselves.  In this case if you don't have someone to look after them you could advocate for an after school program or a social skills program.  Now I am not saying this is just as easy as asking for it, (notice I wrote "advocate"). In fact it may not be easy at all, but if your options are few, you can't avoid at least asking.  Some schools are hip to the needs of children with autism and offer their own programs, if you happen to know one, please put it on blast here so we can all move to that particular state and school district!
3.  Quit your job and go on public assistance
If you don't work, you don't have to pay nor find child care. There are other issues which make this option unappealing, but hey at least you know your child is being taken care of properly! I jest, but really what is a parent to do when all other options have been exhausted?

Any other suggestions are welcome.  Depending on where you live you may have other options like offered by non profits, or state agencies to answer the question of what to do when you have no one left to care for your child.

This is why my mother and I founded- Autism Child Care Connection Inc.  We are preparing to remedy the situation (at least in our area) by creating a safe place for children with autism.  We are making it inclusive, because life is diverse, yet specialized because we know autism and the challenges that go along with it. I know first hand what its like to have your child kicked out of daycare, on  your second week of a job that you were hoping would pull you and your family to a better standard of living.  I have had my own relatives ask me to take my child somewhere else.  I have had to leave jobs for lack of child care.  I also know that I am not alone.  At least once a week I get a phone call from a parent in the same situation I was in.  For the longest time I thought that someone else, some agency, foundation , group would come along eventually and solve the problem.  But no one has.  They have attempted to assuage it with lesser programs, respite, and special parents nights, but that does nothing for a single mother who needs either full day care or consistent after school care.

I am looking for solutions, if you have some things that have worked for your family or in your community please share in the comments.

October 18, 2009

Regression Rewind, Forgetting Abilities and other Autism Oddities

Yesterday I watched the last 1/2 hour of Molly on television.  For those of you unfamiliar with this movie; it stars Elisabeth Shue as a twenty-something girl with autism. Her brother, Aaron Eckhart takes her from an institution so she can receive an experimental surgery to cure her autism.

I'm glad I only watched the last 1/2 hour because in five minutes I was already tearing up. I would have been a total wreck had I watched the whole thing.
SIDEBAR***Am I the only parent who cries at all things autistic?  I find that sometimes I can not even watch a simple news report about autism with out turning on the waterworks.***

Its an older movie (1999) so I'm going to give away the ending.  Think Awakenings - She is cured, falls in love, rekindles a relationship with her brother and is poised to start living life anew, when alas the surgery doesn't take and she returns to her autistic self.  My descriptions really does not give the movie justice, but forgive me I only saw the last 30 minutes.

Regression sucks.  Whether its an experimental surgery or in my children's case a year of school or summer vacation, when regression rears its ugly head it is completely unwelcome.  I consider it one of the unpleasant dips on the autism roller coaster.  One of my children is currently going through a regression.  I have no idea why and I am clueless as to what to do. I liken it to when you can't find your keys in your purse, you just dump everything out in order to find them.  "Is it because we've been lapse on the diet?"  "Is it the new school?"  "Maybe someone's making fun of her."  "Should I try a new supplement?" "Too much TV?" Unfortunately regression is common in autism and this is not the first time it has happened to this child.   Sometimes they come out of it and make a progression and sometimes not.  I hope its the former in her case, that maybe this is just growing pains or seasonal.

October 12, 2009

You Aut to Know! takes on the metaphysical side of Autism with upcoming guests; medium, Karen L. Garvey and intuitive Terri Jay










Forget sign language, PEC's and voice output devices; when it comes to communication, Nicole's upcoming guest use a better tool...the mind. Call in live 10/18 and 10/25 6PM EST - (347) 996-3422.


One of the hallmarks of Autism is a delay in language or no language at all. Parents continually seek hours of speech therapy, alternative communications systems and devices to give their child a voice. Some individuals with autism, never acquire the ability to speak.


On 10/18, You Aut to Know! host Nicole Flamer will interview, noted medium Karen L. Garvey of the Answer's Unlimited about how she has helped families cope and gain a global understanding of autism. After 9-11, Karen L. Garvey discovered she had a surprising “mediumship” ability. Since then, Karen has guided thousands in understanding their journey and becoming happier. Karen draws an unusual number of people who have a connection with autism (as a parent, caregiver, doctor, etc.) and as such has opened up a beneficial global understanding of autism by helping those connected to the condition through seminars, articles, and one-on-one sessions.

Understanding is beneficial, but what if you could also know what your loved one on the autism spectrum was thinking, by "other means"? Intuitive Messenger, Terri Jay is ready to facilitate that desire. On 10/25, Terri Jay will explain her unique gift of hearing non verbal communication with the You Aut to Know audience. For over 35 years Terri worked with children with disabilities. Terri eventually realized she could hear non-spoken communication. Terri uses her intuitive gift over the phone for parents of autistic children, those with a loved one in a coma, PVS, Alzheimer's, dementia, etc. Terri says, "I know there are varying degrees of being verbal so I offer this service to those whose children have very limited ability to communicate." In addition, Terri Jay also teaches people how to be more intuitive.

You Aut to Know is proud to bring both of these gifted women to you live at www.blogtalkradio.com/aut_toknow. Call in to talk-(347) 996-3422, or submit your questions through the chat feature.

About You Aut to Know!
You Aut to Know! is an interactive, live talk radio show that features Autism news, views and resources. Every Sunday at 6pm EST, host Nicole Flamer finds informative guest doing phenomenal things for the autism community and their families. Nicole also shares her unique perspective as a writer, advocate and mother of 3 children on the autism spectrum. Check out the companion blog, www.auttoknow.blogspot.com for updates on guest appearances and featured resources.

About BlogTalkRadio
BlogTalkRadio is a free, web-based platform, which allows any user with a phone and a computer to host a live, interactive Internet broadcast. Hosts call into the service by phone, managing callers on the web-based host dashboard. Shows stream live directly from the host’s BlogTalkRadio web page with archives available for all past shows. BlogTalkRadio has been featured on ABC News, The Washington Post, Portfolio, Talkers Magazine, and TheStreet.com. The citizen-broadcasting network can be found at: http://www.blogtalkradio.com

Below is a link to my press release, please share.

October 11, 2009

Episode 10/11 Resources

Great show! Lindsey Nebeker a total delight!  Will be back for part 2.
Opening Music
  

Focus on Foundations


ACT Today - grants from $100 - $5000 to pay for treatments and therapies, and assessments.  Due date approaching October 26, 2009


Autism A-Z

October 5, 2009

New Rates for Autism, now 1 in 100***UPDATE No wait, its 1 in 91?



Wow, two reports with extraordinary instances of children with autism! What are the implications of these numbers on services, research, and awareness?


A national survey of parents showed the prevalence of autism spectrum disorders (ASDs) is
approximately 1 in 91 U.S. children. The study, “The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007,” was published in the
Oct. 5, 2009, issue of Pediatrics. The study drew on data from the 2007 National Survey of Children’s Health, a telephone survey of parents conducted jointly by the Health Resources and Services Administration and the Centers for Disease Control and Prevention.

*ORIGINAL POST*

Two new government studies suggest autism spectrum disorders are becoming more common in children in the USA. However, researchers say, it is not clear how much of the increase is a result of more frequent and earlier diagnoses and how much is a result of a real rise in the conditions.
"The concern here is that buried in these numbers is a true increase," Tom Insel, director of the National Institute of Mental Health, said Friday at a news conference. "We're not sure how big it is."
Insel noted that President Obama wants to increase spending on autism research by the National Institutes of Health by 16% — a bigger bump than in any other area of NIH research.
One of the studies, published today in the journal Pediatrics by researchers at the Health Resources and Services Administration, found that one in every 91 children ages 3 to 17 have such a disorder, as determined by a survey of the parents of 78,000 children. That's an estimated 673,000 children, the authors write. In half the cases, parents report their children's symptoms as "mild."
Prompted by the Pediatrics study, the Centers for Disease Control and Prevention is announcing not-yet published results of a second study. It finds about one in 100 8-year-olds has an autism spectrum disorder, or ASD. In a similar 2007 study, the CDC placed the rate at one in 150. Details of the study are due this year.
The Pediatrics paper discusses several possible explanations for the apparent increase in ASD diagnoses. They include a broader definition of autism disorders and a heightened awareness of them on the part of parents and doctors.
"This is something that further research is going to have to look at," Michael Kogan, lead author of the Pediatricspaper, said in an interview. Kogan is a scientist at the Health Resources and Services Administration's Maternal and Child Health Bureau.


BY THE NUMBERS
A new government survey estimates that more U.S. children than ever have a diagnosed autism spectrum disorder. Overall, the prevalence was 110 out of every 10,000 children ages 3 to 17. But the rate varied by sex and racial or ethnic group: 

Boys: 173 of 10,000

Girls: 43 of 10,000

Hispanic: 103 of 10,000

Non-Hispanic white: 125 of 10,000

Non-Hispanic black: 61 of 10,000

Non-Hispanic multiracial: 71 of 10,000

Non-Hispanic other single race:  66 of 10,000

Source: Pediatrics
Pediatrician Susan Levy, founder and director of the Regional Autism Center at Children's Hospital of Philadelphia, notes that Kogan's study is based only on what parents said about their children, not information from doctors involved in their care.
"For what it is, it's very well done, and I don't mean that critically," she said in an interview. "It is one method of getting a handle of how many people in the country have this disorder. Is it the best method? No, but it is one way of approaching it."
Surprisingly, Kogan's survey found that the parents of nearly 40% of children reported to have been diagnosed with ASD said they no longer had the disorder. Perhaps their doctor labeled them as having ASD so they could get services for developmental delay, Kogan speculated.



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October 4, 2009

You Aut to Know! Resources - 10/4 Episode


Topic; living chaos to chaos, crisis to crisis
Focus on Foundations
Mesa - Angels - www.mesa-angels.com - grants for those in extreme need, not autism specific


Autism A-Z
Echolalia

Music
Opening
Mister Frites - The Boy Who Never Talks

Closing
Jibs - The Flower Song

October 2, 2009

Secretly addicted to crisis, autism edition


I spent most of my middle daughter's kindergarten year embroiled in conflict.  We were having placement issues - they wanted her out of the class while I wanted her in. I was also trying to get my son placed in an approved private school. My husband was in a car totaling accident and while he walked away from the crash with no injuries his income which was dependent on his car was impacted.  I was not working at the time so we were basically relying on the kindness of my parents and social security.  I was sick, it seemed as if I were coming down with a new illness every week, and of course I had no insurance to pay for anything serious.  My life was a mess.  On top of that my children were out of control.

You might ask, what's this has to do with secret addictions and autism? Everything!  The situation I outlined above was almost two years ago and nothing is the same.  My daughter is still in her appropriate placement, my son is in the private school, my husband and I no longer live together but we are still married and trying to reconcile, I work, I am not sick, I have insurance and my kids are still out of control!

What changed?  I did.  Autism gets a bad rap for being responsible for so much, from breaking up marriages to bankruptcy and while I do definitely see the impact of having three children on the spectrum makes, the rumors of its magnitude have been greatly exaggerated.

This brings me to the secret addiction and the turning point for me.  The school district and I took a year to finally agree on what was going to happen to my daughter. Luckily they agreed with me. After the last IEP regarding my daughters placement had ended, I found myself sitting at home with a strange longing, dare I say a mourning for the year long struggle of events I had just exited from.  Weird?  I actually started taking stock of the List, (you know, the list of things you have to schedule, manage or search for your children) and found that it was filled with mundane things like doctor's appointments and recreation activities.  I was a little sad to see that "ream out my son's teacher" was not on it.  What was I going to do since I no longer needed to wait earnestly for the next episode of Nicole Against the World?  I became melancholy, depressed even. It took about a week for me to see that I was addicted to DRAMA, CHAOS, and most of all CRISIS.  Nothing felt quite as good as that fight or flight experience, that adrenaline rush from spending nights going through data, old IEP's and letters and emails from my kids teacher trying to find a mistake.  I realized that not only was this not a new phenomena for me, it had actually started when my son was first diagnosed.  That's when I started to feed off the drama that was happening to my life.  With out it, I felt empty and worthless.

Are YOU on a crisis cycle?  You may say that, "these things just happen, its not my fault my kids are autistic and they need advocacy and care."  And you would be right, it isn't your fault.  Unfortunately I find the service delivery system a system of extremes.  You are always put in the position of having to prove your disability(or your child's disability) while proving your right to exist in the community.  In other words we as parents are continually backed into a corner.  What's left to do, but fight or flight?  Obviously we can't leave - at least most of us can't.  We could fall down and play dead, but what good would that be to our children?  So we fight.  Timidly at first, but after a few kills we puff up with arrogance.  We saunter into that meeting room and sit at the head of the table because it has our name on it of course.  We banter with the best of them, throwing around "least restrictive environment" and FAPE as if we made up the terms.  And it feels good.  Really good.   Finally they are paying attention to me, all eyes at the table are waiting for my input.  You've fought the law and you won.  Ahhh, but now your addicted.  Its not easy to go from being star of the IEP meeting to regular old parent and some people don't.  That's when it starts to be your fault.  When you start investigating every little note and comment an when nothing is satisfactory to you.  That's when you know that there is a problem and it's not "the man" its you and your addiction to adrenaline.

Listen this Sunday at 6pm to You Aut to Know radio show, as I continue the discussion on autism, parenting and chaos crisis adrenaline addiction and give suggestions on how to go cold turkey.

September 30, 2009

You Aut to Know! Update and Resources, 9/30 Episode



Sept 30 Episode
Focus on Foundations
www.autismallies.org - financial assistance grants for things not covered by insurance, school districts, etc
Autism A - Z
DSM - IV - Diagnostic and Statistical Manual of Mental Health Disorders, Fourth Edition, Revised Text. The American Psychiatric Association developed the DSM to serve as the primary guide for diagnosing mental health disorders such as autism. Both mental health professionals and insurance providers refer to the manual as a diagnostic reference.


Discussed the over use of the autism label.


Upcoming Shows and Guest
10/04/2009 6:00 PM - Creating a fulfilling and happy life w/ proper community supports for your loved one w/ autism.











10/25/2009 6:00PM - Terri Jay, Intuitive Messenger




September 28, 2009

9/27 Episode will be re-scheduled


Oh my, what a night!  Technical difficulty, is an understatement.  Last night's show was a mess, but it will be rescheduled.
First I got disconnected from the switchboard and then my guest and I never touched base largely due to different time zones, something which I neglected to plan for.  So I am sorry to any listeners who came by hoping to hear Terri Jay.  I plan to upload an abbreviated segment this week and then reschedule Terri Jay for sometime soon.

Peace,
Nicole

September 21, 2009

Resources from Episode 4 - 9/20 You Aut to Know Show

Great show. Still trying to work out the music kinks.
Music
Julandrew - Get back in line
Blog of Interest
Asperger Square 8
Autism A-Z
CHAT or M CHAT - for free download - The M-CHAT checklist is a tool used to facilitate the screening of young children that are at risk for autism. The M-CHAT is a screening tool for early detection of autism. Pediatricians and family doctors often use this questionnaire during a child's 18-month developmental check-up. If a child fails the M-CHAT once, you are advised to re-screen the child approximately one month later. If a child fails a second time, that child should be referred to a specialist for diagnosis. This screening tool should be used to alert health professionals for the need of a diagnostic assessment performed by professionals trained in autism assessments.


CARSThis 15-item behavior rating scale helps to identify children with autism and to distinguish them from developmentally handicapped children who are not autistic. In addition, it distinguishes mild-to-moderate from severe autism. Brief, convenient, and suitable for use with any child over 2 years of age, the Childhood Autism Rating Scale (CARS) makes it much easier for clinicians and educators to recognize and classify autistic children.

September 16, 2009

Lo Jacking the Kids

I saw a news article today about how the company Lo Jack, known for its car security just hired someone new to head up its "Safety Net Unit" This unit develops solutions for populations prone to wander, like kids with autism, my kids. Also known as "elopement".

I laughed because my image of Lo Jack comes from the movies, where a thief steals a car and then someone activates their lo jack system and the car comes to a hault, foiling the car thief's plan to reap unearned rewards from its many valuable parts. But Lo Jacking the kids, that is not so funny.

Lo Jack felt the need to hire someone experienced with the elderly and disabled in order to really meet the needs and develop new solutions for this population.

From Lo Jack's recent press release, Safety Net is:
is a comprehensive system that in conjunction with the Project Lifesaver Program enables public safety agencies the ability to track and rescue people with cognitive conditions who tend to wander, including those with Alzheimer's, autism, Down syndrome and dementia. LoJack SafetyNet is comprised of a Personal Locator Unit (PLU) worn by the client, a Search and Rescue (SAR) Receiver for law enforcement, a database of key information about the clients to assist in search and rescue, and 24x7 emergency caregiver support.
Pretty impressive? All of my children have wandered away on two separate occasions for more than fifteen minutes and in one instance I did have to call the police. Thankfully they didn't wander far, curiousity led them down the street. None the less, it is a terrifying situation that conjures up far too many sad news reports and personal fears than I care to mention.

So what is involved in this service?
A Personal Locator Unit is typically worn by the person at risk around their wrist or ankle. The PLU constantly emits a Radio Frequency signal, which can be tracked regardless of where the person has wandered -- even into a densely wooded area, a body of water, a concrete structure, or a building constructed with steel.
The Radio Frequency signal enables police to pinpoint the precise location of the missing person using the handheld, portable SAR Receiver. The receiver can actually detect the Radio Frequency signal from the PLU within a range of approximately one mile in on-the-ground searches and 5-7 miles in searches by helicopter. The database, a critical component of the solution, includes key information that provides insight as to where the person might have wandered if he/she goes missing, and provides searchers with a recent photo and other pertinent information. LoJack's caregiver support organization is available by phone and e-mail and is accessible 24x7 for emergencies.

I like the idea of being able to find my kids if the need arrives, but the idea of them walking around daily with a device attached to their wrist or ankle, disturbs me. Also the cost is a bit prohibitive - $99.00 registration fee and $30.00 monthly. Not saying they aren't worth it, just wondering if their is a better way to teach safety awareness.

I think if it became a serious problem, I would definitely consider it, but right now I don't think I will be lo jacking the kids anytime soon.

September 12, 2009

What does autism look like?

Autism is not visible.  Yes people see behaviors and stims, but if a child is on the spectrum and your ABA therapy has been successful, you might not see those stims or behaviors.  How does society reward such progress?  Its a two edged sword - on the one hand inclusion is the goal, but accomodations should not be withheld. How do you train someone working a minimum wage job to be able to identify disability in a customer? Read how one family challenged a major retailer's "policy".


Abercrombie and Fitch fined for discrimination against girl with autism
by Madeleine Baran, Minnesota Public Radio
September 9, 2009

St. Paul, Minn. — Abercrombie and Fitch has been fined $115,264 for discrimination, four years after employees at the Mall of America store refused to allow a family member to accompany an autistic girl into a fitting room.

Judge Kathleen Sheehy, an administrative law judge, found that the retailer had discriminated against the 14-year-old girl, in violation of state statutes. Sheehy ordered the fine this month, after the retailer repeatedly refused to respond to the daughter's mother's request for an apology and denied engaging in discriminatory practices.

The retailer has appealed, charging that the fine is excessive.

The judge found that the girl, whose name has not been identified, suffered mental anguish as a result of the incident.

A psychologist who interviewed the autistic girl said she reported feeling "bad," "scared," and "nervous." The girl told the psychologist, "It's all my fault. I hate autism." She added, "I am a misfit at Abercrombie."

A spokesperson for Abercrombie and Fitch declined to comment, citing pending litigation.

The girl had been shopping for school clothes with her 17-year-old sister at the Bloomington store in August 2005. Her sister requested to accompany her into the fitting room, and told an associate that her sister has a disability and can not be left alone.

The associate then told the sister that corporate policy mandated that only one person be allowed in the fitting room at a time. He refused to let the sister accompany the autistic girl, even when the sister provided information about the girl's disability.

The sister then called her mother, who had been shopping at a nearby store in the mall. The mother, Elizabeth Maxson, arrived and questioned the associate about the policy. She explained that her 17-year-old daughter was a caregiver and asked that she be allowed to accompany the autistic girl into the fitting room.

Maxson asked to see a copy of the store's policy, but employees said they could not locate it. She then asked for the customer service phone number, and left the store to call the company.

The mother said a customer service employee told her, "So, you think our fitting room policy is ridiculous," according to court documents. Maxson asked to file a complaint about the incident, but the employee offered no further assistance.

She then returned to the store and asked to speak with a manager. An assistant manager said he could not deviate from the policy. He offered to let the Maxsons buy as many clothes as they wanted, try them on at home, and then return the items that did not fit.

Maxson sent two letters to the retailer, but received no response. She called customer service again to ask for the record of her telephone complaint. A customer service representative declined to provide records, and stated they were for company use only.

She then reported the incident to the Minnesota Department of Human Rights, which began an investigation.
Continue

August 27, 2009

New Position Statement on the Definition of INCLUSION

The Division for Early Childhood (DEC) and the National Association for the Education of Young Children (NAEYC) have joined forces to approve a position statement on the definition of inclusion.
The definition includes the following: Early childhood inclusion embodies the values, policies, and practices that support the right of every infant and young child and his or her family, regardless of ability, to participate in a broad range of activities and contexts as full members of families, communities, and society. The desired results of inclusive experiences for children with and without disabilities and their families include a sense of belonging and membership, positive social relationships and friendships, and development and learning to reach their full potential. The defining features of inclusion that can be used to identify high quality early childhood programs and services are access, participation, and supports. You can learn more about this joint policy statement at http://community.fpg.unc.edu/resources/articles/Early_Childhood_Inclusion

August 26, 2009

Tourette Syndrome Association has "Back to School: Making Successful Transitions" teleconference available on their website

Tourette Syndrome Association has great resources that benefit individuals with autism.  Did you know that their are a number of people dually diagnosed with autism and tourettes?  I found a lot of their materials relevant and informative.  Passing it on.


"Back to School: Making Successful Transitions"
August 18, 2009 Teleconference Recording
Now Available on TSA Website!

On August 18th, TSA conducted an teleconference on easing back-to-school transitions for students with Tourette Syndrome. The audio was recorded and posted on the TSA website and is now available for listening.

This 53 minute audio presentation supplies significant information to families and caregivers with transition needs as they pertain to students attending a new school, new grade or a teacher new to them.
To listen to the teleconference, click here to go to the TSA website page.

The original teleconference was presented by TSA Education Specialist Kathy Giordano to an audience of concerned parents and caregivers. Kathy is an Education Specialist with the national Tourette Syndrome Association (TSA). She presents nationally for TSA on issues concerning Tourette Syndrome and related disorders, positive and proactive educational & behavioral techniques, and Functional Behavioral Assessments to audiences of teachers, special educators, clinicians, school based staff, allied professionals and families. Ms. Giordano is the mother of three adult children, her youngest diagnosed at the age of 5 with severe Tourette Syndrome with ADD, OCD and ODD. She has a background teaching English in grades 7-12 and has worked to assist school districts as a behavior consultant since 1998. Ms. Giordano has appeared on the PBS Series "Nova," in a segment about Tourette Syndrome which aired in the United States and on the BBC.

Stay up to date on Tourette Syndrome-related news and bookmark the national TSA website and visit often!

Tourette Syndrome Association
42-40 bell boulevard, suite 205
bayside
NY
11361

Destroying Myths.......

August 25, 2009

Cindy Schneider from Acting Antics will be our very first guest for the September 13 show!

Join us for a candid and informative interview with Cindy Schneider, founder of Acting Antics; an innovative theater program designed for students diagnosed with Autism, Asperger Syndrome, HFA, ADD, NLD or other deficits in social understanding.


Listen to internet radio with You Aut to Know on Blog Talk Radio
Cindy is also the author of Acting Antics; A Theatrical Approach to Teaching Social Understanding to Kids and Teens with Asperger Syndrome - www.actingantics.org
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