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

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

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Here is NASP Position Statement on the Netflix series “13 Reasons Why”. I think that it is important to be careful with the information and discussions we have around suicide. This position statement is worth reading.

13 reasons NASP

Guidance for Educators

  1. While we do not recommend that all students view this series, it can be appreciated as an opportunity to better understand young people’s experiences, thoughts, and feelings. Children and youth who view this series will need supportive adults to process it. Take this opportunity to both prevent the risk of harm and identify ongoing social and behavior problems in the school community that may need to be addressed.
  2. Help students articulate their perceptions when viewing controversial content, such as 13 Reasons Why. The difficult issues portrayed do occur in schools and communities, and it is important for adults to listen, take adolescents’ concerns seriously, and be willing to offer to help.
  3. Reinforce that school-employed mental health professionals are available to help. Emphasize that the behavior of the second counselor in the series is understood by virtually all school-employed mental health professionals as inappropriate. It is important that all school-employed mental health professionals receive training in suicide risk assessment.
  4. Make sure parents, teachers, and students are aware of suicide risk warning signs. Always take warning signs seriously, and never promise to keep them secret. Establish a confidential reporting mechanism for students.Common signs include:
    • Suicide threats, both direct (“I am going to kill myself.” “I need life to stop.”) and indirect (“I need it to stop.” “I wish I could fall asleep and never wake up.”). Threats can be verbal or written, and they are often found in online postings.
    • Giving away prized possessions.
    • Preoccupation with death in conversation, writing, drawing, and social media.
    • Changes in behavior, appearance/hygiene, thoughts, and/or feelings. This can include someone who is typically sad who suddenly becomes extremely happy.
    • Emotional distress.
  5. Students who feel suicidal are not likely to seek help directly; however, parents, school personnel, and peers can recognize the warning signs and take immediate action to keep the youth safe. When a student gives signs that they may be considering suicide, take the following actions.
    • Remain calm, be nonjudgmental, and listen. Strive to understand the intolerable emotional pain that has resulted in suicidal thoughts.
    • Avoid statements that might be perceived as minimizing the student’s emotional pain (e.g., “You need to move on.” or “You should get over it.”).
    • Ask the student directly if they are thinking about suicide (i.e., “Are you thinking of suicide?”).
    • Focus on your concern for their well-being and avoid being accusatory.
    • Reassure the student that there is help and they will not feel like this forever.
    • Provide constant supervision. Do not leave the student alone.
    • Without putting yourself in danger, remove means for self-harm, including any weapons the person might find.
    • Get help. Never agree to keep a student’s suicidal thoughts a secret. Instead, school staff should take the student to a school-employed mental health professional. Parents should seek help from school or community mental health resources. Students should tell an appropriate caregiving adult, such as a school psychologist, administrator, parent, or teacher.
  6. School or district officials should determine how to handle memorials after a student has died. Promote memorials that benefit others (e.g., donations for a suicide prevention program) and activities that foster a sense of hope and encourage positive action. The memorial should not glorify, highlight, or accentuate the individual’s death. It may lead to imitative behaviors or a suicide contagion (Brock et al., 2016).
  7. Reinforcing resiliency factors can lessen the potential of risk factors that lead to suicidal ideation and behaviors. Once a child or adolescent is considered at risk, schools, families, and friends should work to build these factors in and around the youth.
    • Family support and cohesion, including good communication.
    • Peer support and close social networks.
    • School and community connectedness.
    • Cultural or religious beliefs that discourage suicide and promote healthy living.
    • Adaptive coping and problem-solving skills, including conflict resolution.
    • General life satisfaction, good self-esteem, and a sense of purpose.
    • Easy access to effective medical and mental health resources.
  8. Strive to ensure that all student spaces on campus are monitored and that the school environment is truly safe, supportive, and free of bullying.
  9. If additional guidance is needed, ask for support from your building- or district-level crisis team. The team may be able to assist with addressing unique situations affecting your building.

See Preventing Suicide: Guidelines for Administrators and Crisis Teams for additional guidance.

Suicide Awareness Voices of Education (SAVE) and the JED Foundation have created talking points for conversations with youth specific to the 13 Reasons Why series, available online.

Guidance for Families

  1. Ask your child if they have heard or seen the series 13 Reasons Why. While we don’t recommend that they be encouraged to view the series, do tell them you want to watch it, with them or to catch up, and discuss their thoughts.
  2. If they exhibit any of the warning signs above, don’t be afraid to ask if they have thought about suicide or if someone is hurting them. Raising the issue of suicide does not increase the risk or plant the idea. On the contrary, it creates the opportunity to offer help.
  3. Ask your child if they think any of their friends or classmates exhibit warning signs. Talk with them about how to seek help for their friend or classmate. Guide them on how to respond when they see or hear any of the warning signs.
  4. Listen to your children’s comments without judgment. Doing so requires that you fully concentrate, understand, respond, and then remember what is being said. Put your own agenda aside.
  5. Get help from a school-employed or community-based mental health professional if you are concerned for your child’s safety or the safety of one of their peers.

See Preventing Youth Suicide Brief Facts (also available in Spanish) and Preventing Youth Suicide: Tips or Parents and Educators for additional information.

Safe Messaging for Students

  1. Suicide is never a solution. It is an irreversible choice regarding a temporary problem. There is help. If you are struggling with thoughts of suicide or know someone who is, talk to a trusted adult, call 1-800-273-TALK (8255), or text “START” to 741741.
  2. Don’t be afraid to talk to your friends about how they feel and let them know you care about them.
  3. Be an “upstander” and take actions to reduce bullying and increase positive connections among others. Report concerns.
  4. Never promise to keep secret behaviors that represent a danger toward another person.
  5. Suicide is preventable. People considering suicide typically say something or do something that is a warning sign. Always take warning signs seriously and know the warning signs.
    • Suicide threats, both direct (“I am going to kill myself.”) and indirect (“I wish I could fall asleep and never wake up.”). Can be verbal, written, or posted online.
    • Suicide notes and planning, including online postings.
    • Preoccupation with death in conversation, writing, drawing, and social media.
    • Changes in behavior, appearance/hygiene, thoughts, and/or feelings.
    • Emotional distress.
  6. Separate myths and facts.
    • MYTH: Talking about suicide will make someone want to commit suicide who has never thought about it before. FACT: There is no evidence to suggest that talking about suicide plants the idea. Talking with your friend about how they feel and letting them know that you care about them is important. This is the first step in getting your friend help.
    • MYTH: People who struggle with depression or other mental illness are just weak. FACT: Depression and other mental illnesses are serious health conditions and are treatable.
    • MYTH: People who talk about suicide won’t really do it. FACT: People, particularly young people who are thinking about suicide, typically demonstrate warning signs. Always take these warning signs seriously.
  7. Never leave the person alone; seek out a trusted adult immediately. School-employed mental health professionals like your school psychologist are trusted sources of help.
  8. Work with other students and the adults in the school if you want to develop a memorial for someone who has committed suicide. Although decorating a student’s locker, creating a memorial social media page, or other similar activities are quick ways to remember the student who has died, they may influence others to imitate or have thoughts of wanting to die as well. It is recommended that schools develop memorial activities that encourage hope and promote positive outcomes for others (e.g., suicide prevention programs).

Read these helpful points from SAVE.org and the JED Foundation to further understand how 13 Reasons Why dramatizes situations and the realities of suicide. See Save a Friend: Tips for Teens to Prevent Suicide for additional information.

Additional Resources

Websites

References

Brock, S. E., Nickerson, A. B., Louvar Reeves, M. A., Conolly, S., Jimerson, S., Pesce, R, & Lazarro, B. (2016). School crisis prevention and intervention: The PREPaRE model (2nd ed.). Bethesda, MD: National Association of School Psychologists.

Contributors: Christina Conolly, Kathy Cowan, Peter Faustino, Ben Fernandez, Stephen Brock, Melissa Reeves, Rich Lieberman


© 2017, National Association of School Psychologists, 4340 East West Highway, Suite 402, Bethesda, MD 20814, 301-657-0270, http://www.nasponline.org

Document may be adapted or excerpted with proper acknowledgement. Please cite as:

National Association of School Psychologists. (2017). 13 Reasons Why Netflix series: Considerations for educators [handout]. Bethesda, MD: Author.

Printable Version

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Related Resources

Save a Friend: Tips for Teens to Prevent Youth Suicide
Share this handout with teens on how to prevent suicide among their peers.

Preventing Youth Suicide: Brief Facts and Tips
Share this handout with basic information on warning signs and prevention measures for youth suicide.

Preventing Youth Suicide: Tips for Parents and Educators
Parents and teachers are in a key position to identify warning signs and get youth the help they need.

NASP Position Statement on the Netflix series “13 Reasons Why”

Childhood Cancer and School

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Fact Sheets/ Articles

Childhood Cancer and School – Fact Sheet

Types of Children’s Cancer

Educational Issues Following Treatment for Childhood Cancer

Collaborating With Physicians: A Guide for School Leaders (NASP)

Potential 504 Accommodations for a Student Undergoing Treatment for Childhood Cancer or a Hematologic Disorder (PDF)

Helping Schools Cope With Childhood Cancer Current Facts and Creative Solutions

Tips for Teachers: Helping the Child with Cancer

• If possible, visit or call the child in the hospital or at home. Let them know you are thinking of them.

• Children will benefit from talking with teachers, parents, or hospital personnel in preparation for the return to school. They will cope far better knowing what to expect, and how to respond. They also need a chance to express their worries and concerns and to know how these will be addressed.

• Be alert to rumours on the school yard and attempt to dispel them as soon as possible. It may be helpful to have a standard response to inquiries, with approval from the family (e.g., “He’s getting excellent care and we are hopeful he will get well.”).

• Work with families and hospital staff to develop an educational program that will meet the child’s needs. Let the child know that you will help them continue with their education and stay connected with their friends.

• When the child returns to school designate a person who the child knows well as a “go to” person. This individual can check in with the child regularly, and be available if the student needs to let someone know they are physically or emotionally uncomfortable.

• Most children who attend school report that they just want to be treated like everyone else. As hard as it may be, try not to be overprotective. Normalize the child’s school experience as much as possible, while adjusting expectations when needed.

• When the child cannot attend for longer periods of time, establish regular contact with the parents or a liaison from the treatment centre. Plan ways that classmates can maintain regular contact with the child.

• Encourage a supportive classroom environment

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CureSearch for Children’s Cancer Series-  Guidance for school personnel

When You First Learn a Child in Your School Has Been Diagnosed with Cancer

Supporting a Child During Treatment

Supporting a Child’s Return to School

Guidance for Parents

LIVESTRONG at School program

The LIVESTRONG at School program uses national standards-based lessons to teach your students about the realities of cancer. While it is a difficult subject to talk about with kids, it is important for students to understand what cancer is and how it can be treated. In addition, this program informs your students about ways that they can make a difference and help those with cancer. The downloadable lessons and printable worksheets below make it easy for you to share this valuable information with your class.  Questions and Answers about Cancer

 LIVESTRONG at School, Grades K-2

LIVESTRONG at School, Grades 3-6

LIVESTRONG at School, Grades 7-8

LIVESTRONG at School, Grades 9-12

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Latch Key Kids

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A latchkey kid or latchkey child is a child who returns from school to an empty home because their parent or parents are away at work, or a child who is often left at home with little parental supervision. (More)

Having your child stay at home alone is a big deal worth preparing to be ready to do successfully. Here is a collection of articles and guides to help with the process.

Articles

When it’s just you After School

Parent Guidebook of Kids Alone at Home

Latchkey Kids in the 21st Century: Keeping Your Kids Safe When You’re Not Home

Why are we so afraid to leave children alone? UCI study finds moral judgments about parents affect perceptions of risk

Latchkey Kids

Legal Age Restrictions for Latchkey Kids

The Library and the Latchkey
“Current trends are again influencing youth services in libraries. Economic and social conditions have increased the need for child care services and created the phenomenon of the so–called &’latchkey child’—the school–aged child who has no parent or guardian at home after school hours and has no alternative care arrangement…. It is not surprising that great numbers of children are in the public library unattended after school, on school holidays, and during emergency closing days such as snow days. What role do public libraries have to play in providing safe shelter for the nation’s children? Where does the library’s responsibility to community needs end? Who will provide the after–school services to children if the public library closes its doors?”

The New Latchkey Kids
“More than a million grade–schoolers have nobody to take care of them once class lets out. Where have all the after–school programs gone?”

Protecting Your Kids When They’re Home Alone
Information from the National Safe Kids Campaign.

Self Care for School Age Children
Report from the Australian Institute for Family Studies, guidelines for parents and children, resources in Australia.

When It’s Just You After School
Information for kids from KidsHealth, includes safety tips.

Keeping Your Latchkey Kid Safe at Home

Kids Home Alone? Follow These Safety Steps

Home Alone Activities

Videos

Readiness to stay home video

Walking Home

Checklist

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Work Completion

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Getting kids to get to tasks is sometimes a difficult road to navigate given their perspectives of “doing” and the consequences or blockages they perceive to be impeding that journey. The art of supporting student work completion through proper scaffolding and supports.

Articles

Promote Student Success During Independent Seatwork

Increasing Time-on-Task and Student Engagement

School-Wide Strategies for Managing… OFF-TASK / INATTENTION

Time-on-Task: A Strategy that Accelerates Learning Educators who use effective classroom management techniques, employ good teaching practices and interactive learning activities have the power to turn on the learning lights.

Simple Teacher Techniques For Impulsive & Distractable Students – Diana Browning Wright, M.S.

Six Reasons Why Students Are Unmotivated (and What Teachers Can Do) – Jim Wright

Possible Interventions for the Function of Escape/Avoidance/Delay

Interventions (PBIS) click links below:

Checklists

Academic Enablers Checklist from Jim Wright at Intervention Central…Great activity to begin with when considering the student’s current skills and gaps to fill with learning readiness.

A Checklist for Everything!

Check It Out! Using Checklists to Support Student Learning

Checklists for Teachers By: Sandra F. Rief

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IEP Goals

On-Task/ Work Completion
When given a task or direction ______ will begin the task within 1 minute and remain on task for a minimum of 10 minutes independently with no more than 2 prompts on 8 out of 10 independent tasks, as measured by staff data.
Given a maximum of one verbal cue, _______will attend to a non-preferred, small-group activity and/or independent assignment, without protest, and remain on task with no task avoidance (bathroom, getting a jacket, tying shoes, sharpening pencil, etc.) for 20 minutes, in 3 out of 4 trials, as measured by observations and staff documentation.
_______ will demonstrate on task-behavior in the general education setting for 75% of intervals during a 10 minute period, with the use of an appropriate fidget and one adult reminder, in 4/5 trials, as measured by observation and data.
________ will attend (sit still, eyes on teacher, hands to self, quiet voice) to a task during large and small group instruction across settings for a 10 minute period with no more then 1 teacher prompt in 4 out of 5 trials as measured by teacher charted data.
With movement breaks and the use of self-regulation strategies, _____ will demonstrate the ability to attend to a task for an average 75% of intervals in a 20 minute class period.

With the use of taught self-regulation strategies and self-monitoring checklists, ______ will independently begin a task (including non-preferred tasks) within 2 minutes of direction for an average of 80% of opportunities, across environments.

With the use of taught self-regulation strategies and self-monitoring checklists, once ______ has began an independent task, he will then remain focused on the task for at least 10 minutes, free from adult prompts, for an average of 80% of opportunities, across environments.

When given an assigned task, ____ will independently complete an assignment/task, and ask for assistance, if needed, with 80% accuracy in 5 out of 5 consecutive trials, in a small group setting, as measured by teacher-charted observations.

When given a non-preferred task paired with the use of self-regulation strategies and rewards systems, ______ will begin the task within 1 minute, and complete the appropriately modified version of the task within a predesignated appropriate amount of time (with use of timer) on 8 out of 10 opportunities, as measured by staff data.

Tackling Challenging Behaviors on the Playground/ Recess

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Wow Statistics!

Problem behavior in non-classroom settings (hallways, cafeteria, playground, common areas) accounts for 50% of all problem behavior in schools.                Colvin, Sugai, Good, & Lee (1997)

A study of four-year-old girls and boys revealed that attention to classroom tasks was greater following sustained outdoor play periods.
Holmes, R. M., Pellegrini, A. D., & Schmidt, S. L. (2006).

The results of one two-year study found that providing a safe play space (with
attendants to ensure safety) for inner-city schoolchildren resulted in 84% more
physically active children compared to children in a comparable neighborhood.
Parley, T. A., Meriwether, R. A., Baker, E. T., Watkins, L. T., Johnson, C. C., &
Webber, L. S. (2007).

A play program for 10- and 11-year old students consisting of a weekly two-hour, adult-guided session yielded significant increases in the students’ verbal creativity and graphic–figural creativity.
Garaigordobil, M. (2006).

Big Idea

Structuring playground or area-specific interventions should center around the development of pro-social skills not just reducing challenging behavior.                         Lewis, Powers, Kelk, & Newcomer (2002)

The Big Picture Articles/ Activities on Recess

A Comprehensive Guide to Effective Recess Implementation

Playground- Make recess a time of joy and learning

Recess Tool Kit

MAXIMIZING RECESS PHYSICAL ACTIVITY Written by: Aaron Beighle, Ph.D.

Teaching Transition Techniques for Promoting Success Between Lessons (Includes going and returning from recess)

Free Recess Related Webinars from Peaceful Playgrounds

Play and Recess -Prepared by – Jeffrey L. Charvat, PhD

A Recess Before Lunch Policy Implementation Guide

Playworks Lesson Plans 390 pages!

*Teaching with the Brain in Mind, 2nd Edition by Eric Jensen Chapter 4. Movement and Learning (Great read with research annotations – ASCD)*

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Make Zones

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Zone Resources

Fit & Fun Playscapes games stencils

School Playground Stencils

SCHOOL RECESS PARTNERS

Playworks – Why

PBIS Strategies

Whole School Lesson Plan on Recess Respect Lesson Plan

Teaching Recess

Good Example of expectations in different areas of the school

elemroar

Power Point

Success at Recess and Other Unstructured Times

RECESS TOOLS

RECESS PLANNING IN SCHOOLS A Guide to Putting Strategies for Recess into Practice – January 2017 CDC

Supervision Self-Assessment (PDF)f423bbff22619f1b8ce86b9f150c5ed8

Social Stories

Tons of Social Stories

Social Story (Source)

RECESS

After lunch we go to recess.

Sometimes recess is on the playground.

A lot of the children play on the playground equipment.

It is fun to play on the playground equipment.

Everyone should play safely.

When the whistle blows that means it is time to line up and go inside.

I will try to line up as soon as the whistle blows.

This will make my teachers happy.

After I line up I will try to stay in line.

Everyone will be proud of me!