Sotos Syndrome

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Sotos Syndrome is also known as cerebral gigantism. It is a condition that occurs due to genetic reasons which leads to having physical overgrowth upon the first years of their life and having a head and facial appearance that are distinctive. The rapid physical overgrowth goes along with the delay of social, language, cognitive and motor development as well as the retardation of the mentality with ranges from mild to severe form.

Basics

Parent Guide-Original article written by Bridget Veitch (updated by Simon Lane)

Family Information Leaflet

Parent Support Group

Organized in 1988, the Sotos syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States and the world. The SSSA is a nonprofit 501(c)(3) organization which is incorporated in the state of Missouri and run completely by volunteers.

The SSSA is a Member of the National Organization of Rare Disorders (NORD).

Other Groups

Email Community at Yahoo Groups

Sotos Syndrome Support Association of Canada

A Support Group for Sotos Syndrome in Australia

Sotos Syndrome Support Association of Finland.

The Arc

The Danish Association for Sotos Syndrome

Sotos Association – L’Eveil – France

Asociacion Sotos – Spain

ASSI Gulliver – Italy

Child Growth Foundation – UK

Videos

YouTube Video on the Basics of Sotos Syndrome

Sotos Syndrome- Longer more complete overview

School

School primer- Information on how to serve a student with Sotos Syndrome.

Behavioral and emotional characteristics in children with Sotos syndrome and learning disabilities

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Case Study

Hana Feels Good at School: An Example of Good Teaching Practice in Integrating a Girl with Sotos Syndrome into Primary School

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Child Sexual Abuse

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So as many of you may know, I write my blog posts in conjunction with events that occur at my school sites. This post has been the most difficult to date. The size and scope of an incident like this occurring on an elementary campus is devastating. I really encourage that parents, teachers, and community members at large help to teach our kids the tools and skills to stay safe.

Fact Sheets

Child Sexual Abuse Fact Sheet

Child Sexual Abuse: YOU CAN PREVENT, RECOGNIZE AND REACT

Brochure English

Straight Talk About Child Sexual Abuse: A Prevention Guide for Parents

Spanish Resources

Abuso Sexual de Niños: UD. PUEDE PREVENIRLO, RECONOCERLO Y REACCIONAR

Hablando Claro Acerca Del Abuso Sexual Infantil: Una Guía Preventiva Para Los Padres

Brochure Spanish 

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Adult education is key to preventing child sexual abuse.

1 out of 10 children will be sexually abused before they turn 18. Chances are, someone you know has been impacted. Research shows that people who are sexually violated as children are far more likely to experience psychological problems often lasting into adulthood, including post-traumatic stress syndrome, depression, suicide, substance abuse, teen pregnancy, school dropout and relationship problems. (Source)

Parent Education

5 STEPS TO PROTECTING OUR CHILDREN  (PDF One Sheet)

Child Sexual Abuse Prevention FACTS:

 

 

Resources for recognizing sexual abuse:

Talking to your child about sexual abuse.

Talking to Children About Sexual Abuse Great sections on ages 4-8, 9-13, and 14-18. Explicitly lays out “What to do?” What to Say?”

By: Sean Brotherson, Ph.D., Family Science Specialist, NDSU Extension Service

10 WAYS TO TEACH YOUR CHILD BODY SAFETY: PREVENTING SEXUAL ABUSE

TALKING TO YOUR CHILD ABOUT MOLESTATION

How To Talk About Sexual Abuse Safety Webpage with more information

KidsPower Resources

7 Kidpower Strategies for Keeping Your Child Safe – Video Series

Four Strategies for Protecting Kids from Sexual Predators

Touch in Healthy Relationships

Circles of Intimacy

Circles of Intimacy-PDF

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Phone Apps

Stewards of Children Prevention Toolkit

Circles of Intimacy

Radio Show

LISTEN TO THE PARENTING TODAY RADIO SHOW: PREVENTING CHILD SEXUAL ABUSE

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Books

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Body Smart, Body Safe: Talking with Young Children about their Bodies- Blog List of Books from A Mighty Girl

Books To Educate Children About Preventing Sexual Abuse

It’s My Body
by Lory Freeman (Parenting Press, 1984)

Keeping Kids Safe: A Child Sexual Abuse Prevention Manual
by Pnina Tobin, Sue Levinson Kessner (Hunter House Publishers; 2nd edition, 2002)

The Most Important Rule of All
by Pam Church
(Prevention And Motivation Programs, Inc., 1997) This book is a read-aloud storybook about child sexual abuse and protection skills for use with children ages 4-8 years.

Order here

My Body is Private
by Linda Walvoord Girard and Rodney Pate (Albert Whitman & Co., 1992)

The Right Touch: A Read-Aloud Book to Help Prevent Child Sexual Abuse
by Sandy Kleven (Illumination Arts Publishing, 1998)

Telling Isn’t Tattling
by Kathryn Hammerseng (Parenting Press, 1996)

Those are MY Private Parts
by Diane Hansen (Empowerment Productions, 2005)
Parents and care-givers can use this read-aloud rhyme as a tool to teach children sexual abuse prevention and empower their young children to say NO. Appropriate for ages 4-8.

Your Body Belongs To You
by Cornelia Spelman (Albert Whitman & Co., 2000)

When I Was Little Like You
by Jane Porett (CWLA Press, 2000)

Hotline

RAINN-The National Sexual Assault Online Hotline