Monday, October 31, 2011

...if you care to share...

"...if you care to share..."

We are sharing an interesting, introspective, heart-felt request from one family to other families with special needs.
Kindly review the entire request before replying or submitting a written entry.  Thanks.

via Kbj Cosse'  "no longer just crying... ADVOCATE!"

Jessica Steiner

Dear Families:
I’m delighted to announce that I am developing a collection of writings for special needs families on the topic of forgiveness, and I am opening it up to your creative contributions.
The idea of this collection is a kind of parenting book, except with no system. It's for people who experience special needs parenting as intuitive, passionate, and autonomous, people who give it all and falter anyway and understand that as parents, we have no choice but to get up tomorrow and get back to it. To do that, we often have to forgive ourselves, for our frustrations and failings, and forgive the kids for all the ways they make it tough.

I feel that in the space between books like "My Baby Rides The Short Bus," "Gravity Pulls You In," and "Seeing Ezra," which are groundbreaking truth-tellers, we still need something that speaks to the process of parenting and pain, evolution and liberation, in our lives. That's what I hope to accomplish here.

I also hope for this book to help enrich the dialogue regarding 'resentments across the spectrum,' and to create an atmosphere where individuality gains traction over labels.

If you look at the introduction to the book, which I've posted on my blog, you'll get an idea what I mean. The book will include essays like this one, which explores the topic and experience of forgiveness personally.

Also on the blog, you can read my post 'The Hundred-Dollar Haircut,' which represents the kind of anecdotal, advice-based pieces I am seeking. These should tell a story of how parents responded to a problem their child faced, how that response did or didn't work, and carry to the parents the message that, 'Even if this doesn't work for you, and it may not, you're still a good parent, and you're doing enough.'

I am particularly seeking pieces by non-white writers, as these voices are underrepresented in the special needs parenting community, however, all work is welcome; I need to hear from all of you.

Submissions can range from 1,200 to 5,000 words, or 5 to 10 pages, and should be sent as a Word document attachment or in the body of the email, to my direct email address, by or about Jan.1.

SWEET ANIMAL: The Parents' Book of Forgiveness - Introduction
Wow.. I'm speechless and amazed. And grateful that you loved your child enough to make sure you found out what's up. There should be NO guilt.

'evolve the workforce'
Hire people with disAbilities.

'disAbilityVOICE - Disability Rights Advocate"
'a global perspective of the disability world'
 lifestyle, social networking, community, perspectives, relationships, interests, rights,
 careers, population, issues, groups, legislation, advocacy,
 resources, supports, services

"Understanding fosters Appreciation
Appreciation garners Support
Support leads to Unity. "

Thursday, October 27, 2011

Dual Diagnosis

'Dual Diagnosis'
Recently, our son was sick with a 'virus'.  Our doctor advised us not to administer antiobiotics because one of our son's conditions could be further drastically impacted by the traditional methods of  addressing the 'virus'.  In other words, if he was not dehydrated, did not continue to vomit, or have sever diarrhea, coupled with an extremely high fever--- just let the 'virus' run its course.  Our son's natural immune system would have to prove itself with the help of OtC meds.

Like, most Parents, we simply want our son to be happy and healthy.  We're not big on pharmaceutics as a preferred treatment method. But, when you have a child that does not/can not 'express' in words that he sick (internally), ---you, You, YOU just want a shot, run a test, put him in an MRI, do something to IMMEDIATELY MAKE HIM FEEL BETTER!

 because the Autism is there every day, all the day long!
And whatever else is going on...

Ok, we had heard of medicines counter-acting one another.  But, this was the first time a doctor actually expressed the 'dual diagnosis' affect as it relates to Autism.  By the way,  for our son's 6th birthday, we chose another pediatrician because (well, we'll talk about that on another day).

It seems that every year, since our son was born, he has been diagnosed with something!

Our son has been diagnosed with several conditions that affect his neurological, biological, mental, emotional, medical and behavorial health. 
Autism Spectrum Disorder
Asperger's Syndrome
Sensory Processing Disorder
Sensory Integration Dysfunction
Semantic Pragmatic Language Disorder
Picky Eater
Gastro Intestinal complications
Irritable Bowels Syndrome
Chronic Constipation
Lactose Intolerant
Non-Life-threatening Sand sensitivity
Non-Life-threatening Citrus sensitivity

And we're  crossing our fingers hoping to get through the remainder of this year, without  another condition to add to the growing chart!  Mind you, he's only 6 years old! (scream!!!!)

As  a matter of fact, some of his treatments, therapies and medicines are classified under insurance categories as Behavioral/Mental Health.

Thus, doctors, therapists, pharmacies and other professional providers of supports and services often reference the terms 'Dual Diagnosis' or 'Co-Occurring Disorders' or 'Dual Treatment' and similar terms to address the needs of individuals who have Autism and other simultaneously occurring conditions.
Many families who are faced with Life-Threatening and terminal conditions are also dealing with 'Dual Diagnosis'.  As a Parent/Caretaker, it is important that we understand these concepts.  It is relevant to diagnosis, treatment, and insurance.

References & Resources

"Understanding fosters Appreciation - Appreciation garners Support - Support leads to Unity. "

The National Association for the Dually Diagnosed (NADD)
NADD - An association for persons with developmental disabilities and mental health needs.

NADD is the leading North American expert in providing professionals, educators, policy makers, and families with education, training, and information on mental health issues relating to persons with intellectual or developmental disabilities.
The mission of NADD is to advance mental wellness for persons with developmental disabilities through the promotion of excellence in mental health care.

 Selected Recent Research Articles on Dual Diagnosis

NADD Accreditation / Certification Program

NADD is embarking on the development of Competency-Based Dual Diagnosis Certification Programs for Programs/Facilities, Clinicians/Professionals, and Direct Support Staff.  

Down's syndrome & Autistic Spectrum Disorder - Down's ...
Autism Society - Related Conditions
Hearing and Visual Impairments: Children with a dualdiagnosis of autism and a sensory ... more in-depth information on hearing and vision screenings for people with autism ...
Right now, at least in the psychology field, the term "dual diagnosis" is used to describe people ... Autism Channel-- A site of particular interest for people with autism ...

Dual Diagnosis - Down Syndrome and Autism
... getting professionals to accept the dualdiagnosis of Down Syndrome and Autism. ... who experienced Down Syndrome without Autism. The stereotype that people ...

PRAYING & Hoping for a Good, Productive and Enjoyable School Year :-)

About the Participants, in Order of Appearance
Fred Fay, early leader in the disability rights movement (1944 2011)
Ann Ford, director of the Illinois National Council on Independent Living
Judy Heumann, leading disability rights activist, Co-Founder of World Institute on Disability
Judi Chamberlin, Mental Patients Liberation Front, a movement for the rights and dignity of people with mental (1944-2010)
Dr. William Bronston, former staff physician at the notorious Willowbrook State School who was dismissed after agitating for change
Bob Kafka, established ADAPT of Texas, a disability rights advocacy organization
Zona Roberts, counselor, UC Berkeley's Physically Disabled Students Program and Center for Independent Living, Berkeley; mother of disability rights pioneer Ed Roberts
Pat Wright, Former Disability Rights Education and Defense Fund [cont. ] Brenda Lee Cosse'
See More

LIVES WORTH LIVING Premieres on the PBS Series INDEPENDENT LENS Thursday, October 27 at 10 PM During National Disability Employment Awareness Month Powerful Documentary Chronicles the History of Americas Disability Rights Movement While there are over 54 million Americans living with d...

Monday, October 24, 2011

Sister creates Math app her 17 year old brother enjoys

"Sister creates Math app her 17 year old brother enjoys"
I have a brother with autism... His use of Apple products inspired me to create my own app! It is an elementary school math app, intended for grades K-2.... but my brother is 17 and he uses it to refresh his math skills.

I put a lot of time into making sure it is interactive and fun for kids to use
. I also made sure that it was reasonably priced... so of those other apps out there are pretty pricey.

Please feel free to check it out! It is called 'K Math' offered by StudyByApp

If you do check it out and like it, please leave some feedback on iTunes and let me know what you think, or where improvements can be made!" 
‎'K Math' app creator Kelly Richards

recently posted on 
I loved your comment on cbsnews. Thanks for sharing! Here is my comment that I posted as well: I have a brother with autism... he absolutely LOVES to use his iPad and iPod Touch. There are so many great educational apps to use... and they are great when we are on the go! He uses his devices in the car, on the school bus, and even when we are waiting in line at the grocery store. It is comforting to know that he is using educational apps that are supplementing what he is learning in school!  ...
Please feel free to check it out! It is called 'K Math' offered by StudyByApp.

  • References and Resources

    Read reviews, get customer ratings, see screenshots, and learn more about K-Math...

    Friday, October 21, 2011

    "October 22 should be very interesting."

    "October 22 should be very interesting."

    Christy Young Cormier
    the Parent of a school-age child
    La TEACH State Coordinator

    September 29 at 8:42am


    Coalition for Louisiana Public Education
    The Coalitiion has been endorsed so far by LA Retired Teachers Asso., LA Asso. of School Superintendents, LA Asso. of Special Ed. Administrators, LA Asso. of Child Welfare & Attendance Administrators, LA Asso. of Educators and over 30 school boards around the state. Thank you, everyone!
     ·  ·  · August 7 at 8:15pm

    References & Resources

    CoaliCoalition for Louisiana Public Education

    'Saving Public Education in Louisiana'

    On the steps of the Department of Education, the Claiborne Building in Baton Rouge  April 25
    Spokespersons from Research on Reforms clarify the issues April 27
    "The Coalition has been officially endorsed by 37 organizations, including current and retired teachers, superintendents, special ed. administrators, school personnel administrators, child welfare and attendance personnel, and school boards all over the state. Thank you everyone for your endorsements and your efforts everywhere on behalf of public education in Louisiana." October 16

    Saving public education in Louisiana
    The Coalition for Louisiana Public Education ("The Coalition") is a newly-formed group of school board members, legislators, superintendents, principals, current and retired teachers, school technology officers, school attendance officers, and activists, with the goal of ensuring that all students in Louisiana have access to high-quality public education without selective enrollment.

    La TEACH - Louisiana Together Educating ALL CHildren

    Favorite QuotationsOne person can make a difference. Every person should try. JFK

    About La TEACHLaTEACH is a statewide grassroots advocacy organization created for the purpose of effecting systems change. 

    Our Mission is: "LaTEACH promotes appropriate, inlcusive education for all students. We work to make parents, educators, the general public and state leadership informed and supportive of research based and effective practices used appropriately for each student."

    (Louisiana Together Educating ALL Children)

    We are working to recruit families and other interested persons statewide to receive pertinent information on laws, proposed legislation, administrative policies and other issues that impact students in Louisiana. We are working to coordinate member advocacy statewide through list serves, phone trees and volunteer teams organized throughout the state by our area coordinators. We are working to educate teachers, administrators, higher education professionals and policymakers on issues that impact our students.

    La TEACH Issues
    Below is information on the three LaTEACH advocacy agenda items as well as other bills of interest to parents of students with disabilities:

    Thursday, October 20, 2011

    Bullying Survey | IAN Research | Interactive Autism Network Community | Share. Research. Discover.

    @EnjoyHi5Autism KBJCosse'

    @RCASDGBR Resource Center ASD
    RCASD is a program of FHFGBR, a nonprofit, 501(c)(3) organization. RCASD is directed and staffed by family members of individuals with ASD.

    by EnjoyHi5Autism
    Bullying Survey | IAN Research | Interactive Autism Network

    Bullying Survey | IAN Research | Interactive Autism Network Community | Share. Research. Discover.

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