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August 17, 2010

My Journey Through Autism

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 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 have helped me come to my own value system.  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 improve my standard of living. Some things worked, some things were broken, some things made sense and a lot 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.  For me it is the only way to deal with the challenges and questions, my family faces day to day.  


Summer's are traditionally hard, because it means I have to spend more time with my kids with less resources available. I know that sounds horrible, but during the summer, I 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 very personal.  Sometimes looking at the truth of the situation can be overwhelming. I am not a banner mother, I get tired, angry and sad about the things my kids can't do. During the summer those things somehow become more evident.


During the summer, the behaviors increase, the regressions start and many times I feel more isolated and exhausted.  This summer was different. The level of services and ESY were the same, but I was different.  For the first time since the last one 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 is their problem. If adults stare at the super duper meltdowns -- its probably because they don't understand, and I don't care if they do. I just decided not to be angry anymore or to make excuses for my children's disability. 


I will always stand up for information about bio-medical and alternative treatments. Parent's need to know they have other options besides, medication and education. I will always stand up for the rights of people with disabilities to be included in society. I can't help but do that.


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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July 12, 2010

Featured Archive Episode - Special Needs Estate Planning with Mark Albertson

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...

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:

 
 

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.


 
 

Things you can do from here:

 
 

June 20, 2010

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

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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April 25, 2010

"Inspired By Autism" Author Claudreen Jackson, Episode Resources

Autism News

How, When Child Develops Autism May Determine Outcomes



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/

March 28, 2010

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


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

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


Focus on Foundation

Show Resources
Pica

Skin Picking



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March 25, 2010

You Aut to Know! Resources - 3/21 Episode

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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March 14, 2010

Developing Your Autism Support System and Episode 2.3 Resources

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
  1. Family - (Your) parents, grandparents, cousins, uncles, aunts, inlaws
  2. Friends
  3. Community - Organizations, non profits, agencies local government, parks and recreation. ARC, Autism Society of America, local school district
  4. Online - Networks, organizations of like minded people for support and information - Autism Child Care Connection(shameless plug), IAN(Interactive Autism Network), Autism Speaks
  5. Government - Social Security Disability, Temporary Assistance for Needy Families, Public Assistance, Medical Assistance
Kinds of Support to Consider
Emotional
Informational
Financial
Instrumental/Active


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



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March 1, 2010

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

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 


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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February 14, 2010

You Aut to Know Digest - Episode 2.2 Resource List

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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February 8, 2010

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

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:




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February 7, 2010

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


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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January 28, 2010

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

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 Soul of Autism: Looking Beyond Labels to Unveil Spiritual Secrets of the Heart Savants
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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January 5, 2010

Letters, the ONLY Way to Get Things Done!


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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