You Aut to Know!

2011-07-27T19:33:00.000-04:00

My daughter chose to create this rabbit costume all on her own...now, who can't engage in imaginative play?

-- Sent from my Palm Pre

Captain Obvious Speaks - The everyday routines of families of children with autism: Examining the imp...

2011-06-19T11:07:00.004-04:00

New Blog Series - Captain Obvious Speaks
I love to check out the new research studies that come out on Autism. Mainly because they are very obvious and wonder how these researchers are coming up with topics to study. Check out the first of many.

Yes, when the kids start to meltdown, the last thing I want to do is take them out.

Sent to you by You Aut to Know! via Google Reader:

The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family

via Autism current issue by Schaaf, R. C., Toth-Cohen, S., Johnson, S. L., Outten, G., Benevides, T. W. on 6/13/11

The purpose of this qualitative study was to explore the lived experience of how sensory-related behaviors of children with autism affected family routines. In-depth semi-structured interviews were conducted with four primary caregivers regarding the meaning and impact of their child's sensory-related behaviors on family routines that occurred inside and outside the home. Findings indicated that sensory behaviors are one factor that limited family participation in work, family and leisure activities; and that parents employed specific strategies to manage individual and family routines in light of the child's sensory-related behaviors. This information has important implications for professionals who work with families of children with autism to decrease caregiver stress and to increase life satisfaction for the child and family.

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Quote Vibe for the Day

2011-06-12T07:21:00.001-04:00

"Everybody is a GENIUS. But if you judge a FISH by its ability to CLIMB A TREE, it will spend its whole life believing that it is STUPID."

Albert Einstein

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Work/Life Balance; money vs motherhood

2011-05-29T11:20:00.001-04:00

I am working on the topic for this weeks show. It comes directly from my life. Last week I missed my oldest son's IEP meeting. I knew it was coming up, but I forgot when it was. I have been stressed out from my job and working overtime, so much that I really don't know when the last time it was that I read a communication book entry. My hubby is really a novice when it comes to advocating for the kids and leaves it to me.

I have been getting to work late and was just put on notice that I need to clean up my act. So of course, I re schedule the 2nd part of my son's meeting at a time that will make me 2 hours late for work. I am not used to this. Last year I could make any meeting, but of course I was making below minimum wage and living with my parents. Now I have my own household, with bills to pay and again, I find I am faced with a money vs motherhood crisis.

What to do? Let's talk about it tonight at 6:30PM EST only on You Aut to Know!
Call in - (347) 996-3422
also on twitter - @aut_toknow

I feel like this.....

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I miss it!!!

2011-05-19T21:26:00.000-04:00

Its been about nine months since I last posted.... and I miss it terribly. I miss doing the show and most of all I miss sharing things about my life through the blog and the show. So, I decided, to start it up again!

Things will be a little different this time around. There is a saying, about walking a mile in someones shoes and yes my feet are tired.
I have a totally different experience that I want to share with other parents.

A little re cap
I have 3 kids on the autism spectrum. Last August, I had an epiphany of sorts, that happened to coincide with my new job. Previously I had spent the last six years being an at home mom. With the kids needs I found difficult to hold down a full time job. With my youngest entering kindergarten, I thought it might be a good time to go back to work. And it was. Not only that I reconciled with my husband and I moved to another state.

Change, change and more change! Surprisingly the kids handled it better than I expected. But the road has not been without its bumps and bruises. All detailed in my upcoming radio broadcast.
The life of working mother with kids on the autism spectrum is dramatically different than the life of mother at home. No brainer, right?

At the onset of this shift, I had altered my long held views on autism and how I processed the children's label and abilities. Most of these realizations have not changed, instead, I would say they have been enhanced.
I am no longer the advocacy aficionado I once claimed to be. In fact I probably need an advocate(more on that in a future post!!!!) In the upcoming shows and post, I will be learning as much as I am facilitating. I welcome this new role and I can't wait to get started

I have no guest planned for the next show. It will be me in a shorter segment of time, but what I hope to share with you will hopefully be uplifting, encouraging and brutally honest.

So if anyone is still reading this blog and wants to listen to the next broadcast, welcome!

See you Sunday, time to be determined as the rules and regs of the platform I use for the show have also dramatically changed.

If one thing is constant its change, whether we like it or not.

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My Journey Through Autism

2010-08-17T22:50:00.000-04:00

For the past 3 years, I have been struggling to find meaning through my children's diagnosis. I have searched for answers and created new questions. Through all the advice and resources I have gathered there was nothing to really answer the question why. Vaccines, genetics, diet, supplements, cosmic destiny, I've researched all of it and nothing really made me feel like I had a real answer to my children's condition or what my role as their parent should be. So I pushed it all aside to take solace in being a resource for others. This experience has been fulfilling and selfish as well. Other's experiences have been a mirror for my own. The emotions I have experienced, the fear and even the joys I have traversed through helped me come to my own conclusions. Which of course could change in month or a year from now. I have never really accepted my children. I wanted to cure them, change them,"typicalize" them, but it wasn't really for them, it was for me. It was to make me feel better. Some things worked, some things didn't, some things made sense and a lot of things didn't. I pride myself on being able to take responsibility for my thoughts and actions, but admitting this simple fact has been the hardest to do. Our lives are journeys, they won't be like anyone else's. My experience although very similar to many of you who read this, will still be very different from yours. I am happy to express that acceptance at least for me has been the only way to deal with the challenges and questions, my family faces day to day. Summer's have traditionally been hard, because it has always meant I had to spend more time with my kids and really see them for who they are. Don't get me wrong, I love my children and our experience on this journey of life is personal. I am not a banner mother, I get tired, angry and sad about the things my kids can't do. The behaviors would increase, the regressions would start and many times I would feel more isolated and overwhelmed. This summer was different. The level of services and ESY were the same, but I was different. For the first time since the last was diagnosed, i am not trying to find any special meaning in why my family is the way it is. I don't really even care anymore. These are my babies and I love them for who they are. The big plus, which I think made the difference for me is that I know longer care if anyone else accepts them as well. That means if kids at the playground run in terror, that's there problem, if adults stare at the super duper meltdowns, its probably because they don't understand. I don''t want to be angry anymore and I really don't want to be looking for ways to change them. I will always stand up for information about biomedical and alternative treatments. I will always stand up for the rights of people with disabilities to be accepted into mainstream society. Parent's need to know they have other options besides, medication and education. I can't help but do that, but in some ways it is necessary for me to have balance in my interactions and participation with the overall "autism community." I had once written that autism is my life. That I ate, slept and breathed autism. What kind of life is that? Even for my children, do they want to be defined by a one dimensional label? If they could communicate it, I think not. It would take away from my oldest independent spirit, my middle one's curiosity and my youngest glowing empathy. They are more than a diagnosis and finally I am more than just a mother with 3 kids with autism.

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Featured Archive Episode - Special Needs Estate Planning with Mark Albertson

2010-07-12T20:29:00.000-04:00

If you are new to You Aut to Know! please check out RSS to download any and all of the past shows.

I chatted with attorney Mark Albertson, who specializes in special needs estate planning, elder law and guardianship. This is always a timely issue of importance in the autism and special needs community.

Mark gave an excellent breakdown of the estate planning process from how to choose an estate planner to what guardianship really means. Although located in Washington State, Mark is very accessible online and by phone for questions. Mark also has quite a number of links to disability, autism, and estate planning resources on his website.

Run time is about 45 minutes after my initial intro.

Catch me on the next You Aut to Know! Every Sunday at 6PM EST.

Click her for the interview with Mark Albertson.

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How Parents Perceive and Feel about Participation in Community Activities: T...

2010-07-12T18:53:00.001-04:00

I had always wondered whether or not the way I experience my child's community participation was slightly different than a parent of a non autistic child, now I have a study that confirms it. Check this out.

Sent to you by You Aut to Know! via Google Reader:

How Parents Perceive and Feel about Participation in Community Activities: The Comparison between Parents of Preschoolers with and without Autism Spectrum Disorders

via Autism current issue by Lam, S.-F., Wong, B. P. H., Leung, D., Ho, D., Au-Yeung, P. on 6/30/10

The present study compared how parents of preschoolers with and without Autism Spectrum Disorders (ASD) perceived and felt about participation in community activities. A questionnaire survey was conducted with 380 Hong Kong parents of preschoolers with ASD and 214 Hong Kong parents of preschoolers without ASD. The two groups were not different in their willingness and frequency of participation in community activities. However, the psychological processes underneath their willingness were very different. Among the parents of preschoolers with ASD, their willingness was associated with how they perceived the difficulty and importance of the participation and what emotions they experienced during the activities. This pattern of association was not evident among the parents of preschoolers without ASD.

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Autistic Teen Falsely Arrested and Detained - Today on You Aut to Know!

2010-06-20T11:39:00.002-04:00

Lisa Alexander, a mother of an 18 year old with PDD-NOS will be my guest. Her son was arrested outside of his local library under the suspicion that he had a gun. If you check out her website - http://avoiceforneli.com/ and read her story or check out her video, you will see, that this was not the case. Neli goes to a private, special day school and it is very hard for him to communicate. They still have not released her son to her and he is currently in a mental hospital. This incident happened May 24 2010.

I want to help this family by creating awareness in the community, but I need your help. This family is in need of donations in order to hire a lawyer to get Neli released.

Please show your support and listen in this Sunday and please call in with questions comments or suggestions. Also forward -http://avoiceforneli.com/ to all you know to help get the word out about this injustice.

To access the show on Sunday, go to this link:

http://www.blogtalkradio.com/aut_toknow/2010/06/20/lisa-alexander-f...

To call in the number is - 347-996-3422.

Also this story has been picked up by the Huffington Post and Essence. There is also a petition available for signing -http://www.thepetitionsite.com/1/autism-and-racial-injustice

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"Inspired By Autism" Author Claudreen Jackson, Episode Resources

2010-04-25T21:25:00.000-04:00

Autism News

How, When Child Develops Autism May Determine Outcomes

Special issue on adults with autism

Autistic Children Barred from School Field Trip for Being "Different"

Autism Resources

Jobs4Autism.com - a resource of job success and job failure stories for individuals with autism.

Guest Resources

Claudreen Jackson - www.claudreenjackson.com

Pervis Jackson Jr. Autism Foundation - http://pjjraf.org/

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I see amazing uses for this as an assistive tech for autism! Check it out.

2010-03-28T23:56:00.000-04:00

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You Aut to Know Digest - Episode "The Dirty Show" Resource List

2010-03-28T22:56:00.001-04:00

Time goes by quickly when you are talking about dirt! Reminiscing about potty training and smearing certainly reminded me of how blessed I am for that time to be over! Take heart, I provided the keys to extreme potty training so you too can rely in the comfort of your child going to the toilet independently. Remember, rule number 1; set reasonable expectations. Great show, hope to revisit the topic again. If you missed it listen to it now or download it for later.

News
During Infancy The Human Brain Becomes Tuned To Voices And Emotional Tone Of Voice

Update on the 27 Year Old Man with Autism Shot and Killed by LA Police Officers

Kids with Autistic Traits not Being Diagnosed

Focus on Foundation

Autism Respite Program

Show Resources

Pica

Information

Solutions

Skin Picking

Information and Solutions

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You Aut to Know! Resources - 3/21 Episode

2010-03-25T20:22:00.000-04:00

Great show on Sunday with Mark Albertson, special needs estate planner. If you missed it, check it out, or download it for later.

Join me next week for "The Dirty Show" - promises to be a memorable one.
Call in or share in the chat.

Presenting...................the Resources

10 Terrific things about people with autism
http://www.earthlyangels.org/

Forced mercury fillings for people with special needs
http://articles.mercola.com/sites/articles/archive/2010/03/20/dental-association-forces-disabled-to-get-mercury-fillings.aspx

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Developing Your Autism Support System and Episode 2.3 Resources

2010-03-14T19:46:00.001-04:00

Sometimes it takes a village

Developing Your Autism Support System
What happens if you can't be around for your children? What do you do if you need surgery or a vacation? Do you have "backup" or a "plan b"? This show we discussed how to set up a autism support system--who to consider--and where you should place them.

The Five Entities to your Autism Support System

Family - (Your) parents, grandparents, cousins, uncles, aunts, inlaws
Friends
Community - Organizations, non profits, agencies local government, parks and recreation. ARC, Autism Society of America, local school district
Online - Networks, organizations of like minded people for support and information - Autism Child Care Connection, IAN(Interactive Autism Network), Autism Speaks
Government - Social Security Disability, Temporary Assistance for Needy Families, Public Assistance, Medical Assistance

Kinds of Support to Consider

Emotional

Informational

Financial

Instrumental/Active

Show is always available for download if you missed it.

Episode Resources
News and Views
Telling the Story: Autism in the Media
Focus on Foundation
http://www.donorschoose.org/

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Susan Rzucidlo is Nicole's guest on You Aut to Know! - Episode Resources

2010-03-01T01:02:00.001-05:00

Great show, please make sure to download it if you missed it.

March is Audience Appreciation Month(self proclaimed, of course!) - If you call in to the show, I am giving away a free book on autism every week to the first person to call in. The call in number is - 1 (347) 996-3422. The first book I am giving away is

Nourishing Hope, by Julie Matthews

Next week's guest - Psychic, Karen Garvey, joins me on You Aut to Know!

Episode Resources

Focus on Foundations
The Golden Fund for Autism - You can register your child with autism for sponsorships or sponsor a child who has autism.

You Aut to Know
Do Fertility Treatments Raise Autism Risk?
Maternal Response may aid Autism Language

A-Z of Autism
D - Developmental Disability - Developmental disabilities are birth defects related to a problem with how a body part or body system works. They may also be known as functional birth defects. Many of these conditions affect multiple body parts or systems.
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You Aut to Know Digest - Episode 2.2 Resource List

2010-02-14T20:23:00.002-05:00

Happy Valentines Day!
found here

Today I talked about the four types of autism treatments;

Behavioral
Relational-Developmental
Biomedical
Sensory

Specifically describing ABA, Floortime, Biofeedback, Discrete Trial Training, The Miller Method.
Nexts weeks guest - Lindsey Nebeker

Focus on Foundation
Act Today - Grants $100-$5000
http://www.act-today.org/act-today-grant-program.php

In the News
Spray version of 'cuddle hormone can ease symptoms of autism'Read more: http://www.dailymail.co.uk/health/article-1250936/Spray-version-cuddle-hormone-ease-symptoms-autism.html#ixzz0fYjple5J
Autism A-Z
B - Biofeedback/Neurofeedback

Autism and Biofeedback
By Gary Ames
Books Discussed

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Continuing Education for Autism........for Parents

2010-02-08T22:01:00.004-05:00

Continuing education in autism is not just for teachers and therapist. Every year new techniques and educational approaches are released to the public. Many promising extraordinary results and I want to know about all of them. If I could I would try them all out, each on a different kid. I like to be the person at the parent meeting that can say, "Oh yeah, I tried that with Sally and she did great" or "TimTim had modest success with that." I would if I could go to every seminar, training or workshop that was offered, or at least I used to be like that.

The last training I went to was about 9 months ago. That is not for lack of opportunity. I am very lucky to be in an area where I could attend an autism or disability related training, seminar, or talk once a week, if I wanted to...if time allowed...if I didn't have to work...if I had childcare...if I had the energy.

There are many excuses for not doing my autism continuing education, all of which are valid and similar to many other families who have a child(ren) with autism. We are not off the hook, researchers in California found that training via DVD is an effective way to convey concepts to parents on methods of dealing with their child's behaviors. Science Daily reported that;

Researchers at the University of California, Santa Barbara (Nicolette Nefdt, Robert Koegel, George Singer and Michael Gerber) explored whether providing training to parents through DVDs could help bridge this gap. The good news is that parents did improve their skills through watching the training videos, and there were improvements in child behavior as well.

While I find this to be great news, I have to admit that I have numerous DVD's and CD-ROM's with information that is valuable, but I somehow never quite find that 2-3 hours to watch. Sometimes the actual care and feeding of my children takes precedence and when I want to sit down and watch something it looks a little bit more like this:

For the Complete Article

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You Aut to Know Digest - Episode 2.1 - Resources

2010-02-07T19:40:00.000-05:00

Back in the saddle again! Join me next Sunday for more Autism News, Views, and Resources only on You Aut To Know!

2/7/2010 Show Recap and Resources

Review of Temple Grandin movie

Find more videos like this on Autism Child Care Connection Network

Claire Danes Got Help From Husband Preparing For Autistic Role

Dr. Andrew Wakefield
http://articles.latimes.com/2010/jan/29/world/la-fg-britain-autism29-2010jan29

RiteCare Language Program (from website)

In the early 1950s in Colorado, the Scottish Rite of Freemasonry of the Southern Jurisdiction of the United States initiated a program to help children with speech and language disorders. The results obtained from this program led to the establishment of RiteCare clinics to provide diagnostic evaluation and treatment of speech and language disorders, as well as learning disabilities.

Today, there are 178 RiteCare® clinics, centers, and special programs operating or planned for children and therapists located throughout the United States. Each facility is staffed by speech-language pathologists or other trained personnel. Through the support of Scottish Rite members, these clinics, centers, and programs continue to increase. The value of this philanthropy has long been apparent. Tens of thousands of youngsters across the United States have been helped significantly. With the good work of dedicated clinicians and parents, the Scottish Rite has achieved successes that could only be imagined a few years back. Children who might have remained educationally behind for a lifetime can now talk, read, and lead productive lives.

http://www.scottishrite.org/what/phil/ritecare.html

Autism A-Z
Animal Assisted Therapy - Using animals to help people with disabilities
http://www.articlesbase.com/health-articles/the-benefits-of-animal-therapy-for-autism-511378.html

You Aut to Know Article Focus

Brains of people with autism recall letters of the alphabet in brain areas dealing with shapes

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You Aut to Know! - Fresh New Season Starts Sun, Feb 7, 6PM EST

2010-01-28T22:28:00.002-05:00

It is time to return to the world of autism commentary and observation. I took a much needed month long break from the radio show and blogging. I found I was starting to take all this a little to seriously (see Paranoid Android post). Anywhoo... I'm back presenting the 2nd season of You Aut to Know!
What to expect? In addition to riveting interviews with cutting edge, well studied guest, I will also give my take on the vaccine debate, discuss the pros and cons of the many autism therapies out there and will continue the Intro to Autism Advocacy series I started last season.

I also added a new segment called the Autism Reading Room where I will review current and not so current books on autism and disability issues.

The first book I will review came out two years ago - The Soul of Autism, by William Stillman. I like Stillman's previous work, Autism and the God Connection(I will review that book later) and I am fascinated by the subject matter. It also doesn't hurt that he is a fellow Pennsylvanian! If you've read the book please share your thoughts either by commenting to this post or emailing me at aut.toknow@gmail.com.

That's it, I have to save all my good stuff for the radio show. Listen in and comment!

*This one goes out to all the mothers out there doin' it up big time with their children....enjoy!

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Letters, the ONLY Way to Get Things Done!

2010-01-05T14:47:00.000-05:00

Having a child with autism means having to interact with numerous agencies, organizations and people. Many times a simple verbal request is not enough to get a what your child needs. I have had more brush offs than I can count in the course of trying to get simple information that relates to my children.

Case in point, this week I have been trying to obtain my children's complete medical records. Oh that sounds simple enough, and for some of you it might be. Call the doctor's office, ask and it shall be given unto you. Yeah, that's what I thought. Considering the fact that I have changed pediatricians over the past 10 years, I had quite a few phone calls to make. Surprisingly I was met with a bit of resistance and excuses. At the end of the day, I had to go back to my advocacy skills and write a letter. As in most things, you have the right to request you or child's medical records at any time, you have right to have errors corrected in them. The office may charge you a reasonable fee to retrieve and copy these records. For more information on your rights to privacy and information go to - http://www.privacyrights.org/. I find it is sometimes a matter of what I like to call "so busy laziness" - you know when the office is just so busy that they can't help you with something that they are supposed to help you with. Sometimes a letter to the right person will motivate them to make your request a priority.

A letter as many of you well know is an official form of communication that if necessary acts as significant symbol of your intent. It is the start of your very own paper trail if you need to file a complaint or seek legal action. A verbal request is very easy to forget, be misinterpreted, or ignored. Also you have no proof that you gave an individual or entity notice of your request. Particularly in special education I find many errors and omissions that can be cleared up with a letter that was sent which sets the record straight.

If you find yourself in need of writing letters in order to really get things started, I have found a great resource, that I wanted you share. Even the most eloquent of us, sometimes struggle with the right thing to say, especially after our emotions have been stirred up and we are pumping with righteous indignation. Here is a link to a web site that has letters for just about every occasion you may face with a special needs child. From requesting an evaluation, to requesting medical records, these kind individuals have already prepared letters for you to use at your disposal.

http://ourchildrenleftbehind.yuku.com/forums/13/t/Template-Letter-B...

Now, all you have to do is put in your personal info and send them off - and wait for the response.

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Intro to Autism Advocacy - Episode Resources

2009-12-20T22:36:00.000-05:00

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

The Autism Checklist: A Practical Reference for Parents and Teachers (J-B Ed: Checklist)

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

2009-12-14T17:48:00.000-05:00

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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Autism And Reading - Episode Resources

2009-12-13T19:07:00.000-05:00

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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Can Educational Therapy Help My Child With Autism?

2009-12-06T19:08:00.001-05:00

Great show, looking to have Dr. Miller on again in the future.

Dr Kari Miller Resources on Empowered Learning
http://www.empoweredlearning.info/youauttoknow.html

Autism A-Z
M - Melatonin
http://sitemason.vanderbilt.edu/news/digest/2008/02/08/melatonin-well-tolerated-sleep-aid-in-children-with-autism.58276

Focus on Foundation
Helping Hands
http://autism-connection.org/

Whats goin on
http://www.medicalnewstoday.com/articles/171838.php

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

2009-11-18T22:25:00.002-05:00

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.....

2009-11-18T20:47:00.001-05:00

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...

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

2009-11-15T22:30:00.001-05:00

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

2009-11-08T19:05:00.001-05:00

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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Including Aspergers with Autism

2009-11-05T10:16:00.001-05:00

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

2009-11-03T13:21:00.001-05:00

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.

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

2009-10-28T23:22:00.001-04:00

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.

Regression Rewind, Forgetting Abilities and other Autism Oddities

2009-10-18T12:17:00.001-04:00

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 twentysomething 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 I found myself in tears by the first 5 minutes, I would have been a total wreck had I watched the whole thing. **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 tearing up.** 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, 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 after an experimental surgery or like in my children's case a year of school or summer vacation, when regression rears its ugly head it is completely unwelcome. I consider 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 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.

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

2009-10-12T17:17:00.009-04:00

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.

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

Episode 10/11 Resources

2009-10-11T21:54:00.002-04:00

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

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

2009-10-05T00:29:00.001-04:00

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

Click here for the PDF info sheet from the American Academy of Pedi...

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*

I don't quite know how I feel about this yet, I'm going to have to check out the studies. Just giving a heads up...

By Rita Rubin, USA TODAY

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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You Aut to Know! Resources - 10/4 Episode

2009-10-04T18:41:00.003-04:00

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

Secretly addicted to crisis, autism edition

2009-10-02T00:05:00.001-04:00

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.

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

2009-09-30T13:12:00.004-04:00

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.

10/11/2009 6:00 PM - Sex, Love and....Autism? Lindsey Nebeker on dating and relationships on the Autism Spectrum

10/18/2009 6:00 PM - Karen L. Garvey from The Answer's Unlimited will be Nicole's special guest on You Aut to Know!

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

9/27 Episode will be re-scheduled

2009-09-28T14:50:00.002-04:00

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

Autism, the new over diagnosis?

2009-09-25T15:08:00.004-04:00

A couple of years ago, I had a string of synchronistic comments that all focused on the same concept, autism is not as prevalent as it is publicized to be.

First, I was talking to a former special educator and I mentioned that I had three kids on the spectrum. He kind of did one of those uncomfortable
grunt-humpf's and said, "well, you know everybody has autism now, I hear about how so many kids are being diagnosed with it. Twenty years ago it was dyslexia, now its autism."

I can hear your gasp at the gall of such a man to say this to a mother, but I get comments like this all the time.

The next comment came when I was talking to a grandmother whose grand-daughter had just been diagnosed. She, I imagine was still in a bit of denial and actually parroted the same quote, "it's just like dyslexia was when my kids were coming up."

I wondered where these people were getting the idea that autism is the new dyslexia.

Autism is NOT like dyslexia, but I can see how people on the "outside" might get that impression. Dyslexia, for many years was a hard to obtain diagnosis characterized by some of the same challenges some parents with a child on the spectrum experience; scarcity of treatment options, not being taken seriously by doctors and/or educators and lengthy struggles to convince people of your childs intelligence despite delays. On the other hand Dyslexia did become a catch all disorder that was over used in the media as a plot for many sitcoms - "Stay tuned for a very special episode of (enter your favorite 80's family sitcom here) where (character) finds out he/she is dyslexic.......

Back to my sync stream....following these two "dyslexia new autism" comments I was treated to a friend telling me about how autism has probably always been around and that people were just paying more attention to it now. I personally don't believe that to be true and I am unsettled by the willingness of the public to accept it as a truth. But the question becomes:

Is it possible for Autism to become an over diagnosed disability? Being a spectrum, autism can range from the very mild PDD/NOS(Pervasive Developmental Disability/Not Otherwise Specified to severe, low functioning(not my favorite terms, but for lack of a better descriptor) autism. If Autism is over diagnosed, can it then become easy to ignore, because everybody has autism?

A recent press release for the documentary Autistic-Like: Graham's Story, suggest that "thousands of children diagnosed each year with autism actually have milder disorders, but to get treatment, parents are often pushed to accept the inaccurate label of autism."

The focus of the film is the struggle of parents Erik and Jennie Linthorst to get help for their 4 year old with sensory processing disorder. The documentary features well known treatment pioneer, Dr. Stanley Greenspan, creator of Floortime, "a specific technique to both follow the child’s natural emotional interests (lead) and at the same time challenge the child towards greater and greater mastery of the social, emotional and intellectual capacities. With young children these playful interactions may occur on the “floor”, but go on to include conversations and interactions in other places." (from website)
On October 11 and 12 the film is sponsoring an international screening event, check out the site for details. From the parents perspective, finding out their son had sensory processing disorder and not autism was liberating, now they can better treat him with more specific interventions.

Marla Cone of Scientific American writes about the work of Irva Hertz-Picciotto, an epidemiology professor at University of California, Davis. Hertz-Picciotto believes it is environmental triggers not better diagnosis that is responsible for the increase in autism cases "The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24 percent increase in children reported to be autistic by the age {this part omitted from original article}"

Cone also states, that "a shift in doctors diagnosing milder cases explains another 56 percent increase. And changes in state reporting of the disorder could account for around a 120 percent increase." Hertz-Picciotto according to the articles says, those factors "don't get us close" to the 600 to 700 percent increase in diagnosed cases.

Obviously the rates of diagnosis, mis-diagnosis and over diagnosis is as much of a mystery as the meaning of the metaphorical puzzle piece which represents this disability.

What need not be ignored is the actual delays in functioning, the social struggle, and the need for help. Autism, dyslexia, sensory processing disorder, these are all just labels. Whether its to get services or to finally place a name with a face(so to speak), labels do not define our kids and they certainly don't change the reality of the challenges families and individuals face. Ultimately my hope is not for my kids to stop being autistic, it for them to have meaning fulfilling lives. Period.

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

2009-09-21T23:31:00.001-04:00

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.

CARS - This 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.

Lo Jacking the Kids

2009-09-16T09:03:00.004-04:00

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 that, just wondering if their is a better way to teach safety awareness.

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

What does autism look like?

2009-09-12T12:52:00.004-04:00

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

New Position Statement on the Definition of INCLUSION

2009-08-27T10:48:00.001-04:00

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

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

2009-08-26T19:30:00.001-04:00

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.......

2009-08-26T00:20:00.004-04:00

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

2009-08-25T14:45:00.000-04:00

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.

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

Survived my first podcast!

2009-08-17T16:43:00.000-04:00

I was really nervous about yesterday's first broadcast. But it went great, fantastic even. I am surprised by the amount of sweat I managed to create if 15 minutes. I think I'll do it again next week.

Featured Music
"Crazy As" by Julandrew

Next Show - August 23, 2009
Topic - Do YOU have a life outside your child's autism?

Please call in with your question's and comments.

Join the You Aut to Know Mailing List

2008-11-04T16:49:00.003-05:00

You Aut to Know!

Captain Obvious Speaks - The everyday routines of families of children with autism: Examining the imp...

Sent to you by You Aut to Know! via Google Reader:

The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family

Things you can do from here:

Quote Vibe for the Day

Work/Life Balance; money vs motherhood

I miss it!!!

My Journey Through Autism

Featured Archive Episode - Special Needs Estate Planning with Mark Albertson

How Parents Perceive and Feel about Participation in Community Activities: T...

Sent to you by You Aut to Know! via Google Reader:

How Parents Perceive and Feel about Participation in Community Activities: The Comparison between Parents of Preschoolers with and without Autism Spectrum Disorders

Things you can do from here:

Autistic Teen Falsely Arrested and Detained - Today on You Aut to Know!

"Inspired By Autism" Author Claudreen Jackson, Episode Resources

How, When Child Develops Autism May Determine Outcomes

I see amazing uses for this as an assistive tech for autism! Check it out.

You Aut to Know Digest - Episode "The Dirty Show" Resource List

You Aut to Know! Resources - 3/21 Episode

Developing Your Autism Support System and Episode 2.3 Resources

Susan Rzucidlo is Nicole's guest on You Aut to Know! - Episode Resources

You Aut to Know Digest - Episode 2.2 Resource List

Autism and BiofeedbackBy Gary Ames

Continuing Education for Autism........for Parents

You Aut to Know Digest - Episode 2.1 - Resources

Back in the saddle again! Join me next Sunday for more Autism News, Views, and Resources only on You Aut To Know!

2/7/2010 Show Recap and Resources

Review of Temple Grandin movie

Claire Danes Got Help From Husband Preparing For Autistic Role

Brains of people with autism recall letters of the alphabet in brain areas dealing with shapes

You Aut to Know! - Fresh New Season Starts Sun, Feb 7, 6PM EST

Letters, the ONLY Way to Get Things Done!

Intro to Autism Advocacy - Episode Resources

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

Autism And Reading - Episode Resources

Can Educational Therapy Help My Child With Autism?

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

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

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

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

Including Aspergers with Autism

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

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

Regression Rewind, Forgetting Abilities and other Autism Oddities

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

Episode 10/11 Resources

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

You Aut to Know! Resources - 10/4 Episode

Secretly addicted to crisis, autism edition

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

9/27 Episode will be re-scheduled

Autism, the new over diagnosis?

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

Lo Jacking the Kids

What does autism look like?

New Position Statement on the Definition of INCLUSION

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

Destroying Myths.......

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

Survived my first podcast!

Join the You Aut to Know Mailing List

Autism and Biofeedback
By Gary Ames