Advocacy ATLAS
Accessible Tools for Leadership and Advocacy Success
From our partners at Genetic Alliance, a great tool for navigating the challenges of advocacy for individuals with special needs in the USA:
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Printable List of Strategies (SDIs) For Your IEP Meeting
SDI stands for Specially Designed Instruction. It is anything specific and unique to your child–determined by their areas of need, to help them access their education. It is based on the evaluations done on your child, to determine their areas of need. SDIs are used to help your child achieve the goals listed in the IEP. Most SDIs should be applied across all environments, not in just one class or classroom. They are adaptations or modifications to the regular curriculum. SDIs are in place to help your child reach their IEP goals and objectives.
Tools and Resources to Stop Bullying
What is Bullying?
Aggressive behavior may be bullying depending on what happened, how often it happens and who it happens to. Find out what bullying is and what the different types are. You can also learn more about other topics related to bullying.
Click here to go to StopBullying.Gov
To highlight important facts and information about bullying prevention this month, the Health Resources and Services Administration (HRSA) has created an all new infographic. Share these resources to raise awareness this month and help prevent bullying throughout the year!
- Bullying Among Children and Youth with Disabilities and Special Health Needs
- Teaching Kids Not to Bully– Nemours
- Bullying Prevention Training Center– A one-stop-shop for training materials for educators and community leaders
Also check out the all new Media Guidelines for Bullying Prevention.
5 Ways to Beat Caregiver Burnout
Recommended by an AXYS member, this site provides support for families who have a special needs child.
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Seeing X Chromosomes in a New Light – The New York Times
Article Title: Seeing X Chromosomes in a New Light
Author: Carl Zimmer
Date of Publication: January 20, 2014
“The term “X chromosome” has an air of mystery to it, and rightly so. It got its name in 1891 from a baffled biologist named Hermann Henking. To investigate the nature of chromosomes, Henking examined cells under a simple microscope. All the chromosomes in the cells came in pairs. All except one.”
Social Attention, Affective Arousal and Empathy in Men with Klinefelter Syndrome (47,XXY): Evidence from Eyetracking and Skin Conductance
Article Title: Social Attention, Affective Arousal and Empathy in Men with Klinefelter Syndrome (47,XXY): Evidence from Eyetracking and Skin Conductance
Authors: Sophie van Rijn, Marjolein Barendse, Stephanie van Goozen, and Hanna Swaab
Date of Publication: January 8, 2014
“Individuals with an extra X chromosome (Klinefelter syndrome) are at risk for problems in social functioning and have an increased vulnerability for autism traits. In the search for underlying mechanisms driving this increased risk, this study focused on social attention, affective arousal and empathy. Seventeen adults with XXY and 20 non-clinical controls participated in this study. Eyetracking was used to investigate social attention, as expressed in visual scanning patterns in response to the viewing of empathy evoking video clips. Skin conductance levels, reflecting affective arousal, were recorded continuously during the clips as well. Empathic skills, i.e. participants’ understanding of own and others’ emotions in response to the clips was also assessed.”
Autism spectrum disorders in XYY syndrome: two new cases and systematic review of the literature
Article Title: Autism spectrum disorders in XYY syndrome: two new cases and systematic review of the literature
Authors: Lucia Margari, Anna Linda Lamanna, Francesco Craig, Marta Simone, Mattia Gentile
Date of Publication: January 25, 2014
“Abnormalities of the sex chromosomes (47, XXY, 47 XYY, 45,X/46,XY mosaicism) are frequently associated with Autism Spectrum Disorders (ASD), but the male predisposition to these disorders has not been clearly explained. Previously, the role of the X chromosome was considered important in the ASD mainly because autistic symptoms were detected in genetic syndromes involving X chromosome (fragile X syndrome, Rett syndrome, Klinefelter syndrome). Instead, few studies have analyzed the possible role of the Y chromosome in the ASD.”
Association of Testosterone Therapy With Mortality, Myocardial Infarction, and Stroke in Men With Low Testosterone Levels
Article Title: Association of Testosterone Therapy With Mortality, Myocardial Infarction, and Stroke in Men With Low Testosterone Levels
Authors: Rebecca Vigen, Colin I. O’Donnell, Anna E. Barón, et al
Date of Publication: November 6, 2013
A November, 2013 article in JAMA pointed to increased heart risks for individuals on testosterone therapy. Since many teens and men with XXY rely on testosterone therapy, we asked Dr. Wylie Hembree, previous member of AXYS’s Board of Directors, to put this article in perspective for those we serve.
Dr. Hembree’s comments:
“Over the years, the question of safety of testosterone treatment of men has been evaluated. Appropriate diagnosis and treatment of men with testosterone has been well demonstrated in the two Endocrine Society Clinical Practice Guidelines and they have pointed out the risks as well as benefits. A few studies have demonstrated the vulnerability of older men – especially frail older men – to testosterone treatment. All of us are very careful about treatment of testosterone deficient older men, especially those with hypertension, heart disease, prostate disease and diabetes. No one should be treated with testosterone without a complete evaluation that clearly demonstrates both clinical and laboratory evidence of testosterone deficiency and carefully assesses the risks of the treatment. Careful monitoring thereafter is essential, especially in men with the above mentioned conditions and older men in general. There is no evidence that testosterone treatment is responsible for prostate cancer but in older men monitoring for prostate cancer is much more difficult.
You Are Not Alone
Article Title: You Are Not Alone – For Parents When They Learn That Their Child Has a Disability
Author: Patricia McGill Smith
Date of Publication: October 11, 2010
“If you have recently learned that your child has a developmental delay or a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.”
Guidebook: FREE Spanish Translation
A Spanish-language translation of Virginia Cover’s essential guidebook, “Living with Klinefelter Syndrome (47,XXY) Trisomy X (47,XXX) and 47,XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosomes,” is available as a FREE download.
Una traducción en español del libro guía esencial de Virginia Cover, “Living with Klinefelter Syndrome (47,XXY) Trisomy X (47,XXX) and 47,XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosomes,” está disponible como una descarga gratuita.