Supporting students with sex chromosome aneuploidies in educational settings

Article Title: Supporting students with sex chromosome aneuploidies in educational settings: Results of a nationwide survey

Authors: Thompson, Davis, Janusz, Frith, Pylead, Howell, Boada, Wilson, and Tartaglia

Date of Publication: August 2022

“Many parents reported their children’s educators had little to no knowledge of SCA conditions, justifying a need to train teachers and policy makers in the unique educational needs of children and adolescents with SCAs. School psychologists should be aware of the frequent need for accommodations and individualized support plans in this population so they can support children and families by advocating for early and comprehensive evaluations and intervention plans.”

Rick Frith2022-06-28T12:56:32-04:00Categories: 47,XXX (trisomy x), 47,XXY (Klinefelter), 47,XYY, 48,XXXY, 48,XXYY, All Variations, Other Variations|Tags: Education|

‘I Wish the School Had a Better Understanding of the Diagnosis’: parent perspectives on educational needs of students with SCAs

Article Title: ‘I Wish the School Had a Better Understanding of the Diagnosis’: parent perspectives on educational needs of students with sex chromosome aneuploidies

Authors: Thompson, Stinnett, Tartaglia, Davis, and Janusz

Date of Publication: March 13, 2022

“Students with SCAs, have a unique educational profile that may be challenging to support within the schools. Challenges with reading and writing, EF, fatigue/endurance, social skills and emotion management may act as barriers to learning, and are frequently triggered in busy classroom environments. Skills hovering in the borderline range are common to the SCA phenotype and are not often well served by special education systems with limited resources and strict cut-offs for qualification. As a result, families may feel they need to advocate strongly for their child to receive adequate support services. To improve the educational experience of children with SCAs, we recommend increased collaboration between the school and the child’s medical team, strong parent partnerships and acknowledgement of the significant role the genetic condition plays in the educational experiences of students with SCAs.”

Rick Frith2022-03-15T13:35:24-04:00Categories: 47,XXX (trisomy x), 47,XXY (Klinefelter), 47,XYY, 48,XXXY, 48,XXYY, All Variations, Other Variations|Tags: Education|

Exploring the Strengths of Students with X&Y Variations

“Children with sex chromosome aneuploidies (SCAs) are often characterized in the literature by limitations and pathologies related to the genetic diagnosis. This study aimed to broaden the SCA phenotype by describing parent reported character and academic strengths. Parents of children with SCAs ages 3-21…responded to an electronic survey asking them to describe their child’s strengths in academic settings. Responses were coded for strengths-based content and analyzed using a mixed-methods content analysis approach. We identified overarching qualitative themes of Social Strengths and Assets for Learning. Quantitative results showed a pattern of overlapping strengths among the trisomy SCAs (perseverance and love of learning), with some significant differences between children with supernumerary X chromosomes (strengths in kindness) and those with an additional Y chromosome (strengths in curiosity, humor, and teamwork). Suggestions for future strengths-based research and educational practices to address academic. developmental and psychosocial risks are explored.”

Rick Frith2022-05-06T16:26:16-04:00Categories: Featured Research Articles|Tags: Education|

School’s out! Now what? – Distance Learning Resources

Resources for Families and Professionals during COVID-19 and Beyond

ADHD

CHADD/National Resource Council Guidance for Uncertain Times

The National Resource Center on ADHD (NRC), a program of CHADD, was established to be the national clearinghouse for the latest evidence-based information on ADHD. The NRC serves as a National Public Health Practice and Resource Center (NPHPRC) with the mission to provide information, education and consultation about assessment, diagnosis, treatment, and issues of health and well-being for children with ADHD and their families. Multiple resources relevant to setting up home learning, supporting organization and time management, and managing strong emotions during COVID-19 have been posted.

ADDitude Magazine: ADHD in a Pandemic

ADDitude provides a range of resources for families, educators, and individuals affected by ADHD with downloadable resource manuals, frequent webinars, and articles on a range of topics related to ADHD.

Autism

AFIRM COVID-19 Toolkit: Supporting Individuals with Autism During Uncertain Times

The UNC Frank Porter Graham Child Development Institute Autism Team created a comprehensive guide with visual tools and resources related to support strategies, coping and calming skills, hygiene, daily schedules and routines, communication, activities, and more.

AFIRM COVID-19 Supplemental Toolkit for Adults

This guide was developed as a response to many self-advocates and family members who reached out to our team to develop resources for adults. It is intended to centralize many different adult-specific resources and can serve as a supplement or companion guide to the Supporting Individuals with Autism through Uncertain Times toolkit. The materials are divided into four topic areas: COVID-19 Resources, Daily Living Resources, Social Connectedness Resources, and Mental Health Resources.

Cincinnati Children’s Division of Developmental and Behavioral Pediatrics Coronavirus (COVID-19) Virtual Outread Series

In partnership with the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD), provides training and community education to parents, caregivers, and community members on relevant topics impacting individuals with developmental disabilities and their families.

UC Davis ADEPT Parent Training

ADEPT (Autism Distance Education Parent Training) Interactive Learning is a 10-lesson interactive, self-paced, online learning module. The goal is to provide parents with tools and training to more effectively teach their child functional skills using applied behavior analysis (ABA) techniques.

Educational Rights and Advocacy

ADDitude Magazine: Your Child’s Educational Rights While Crisis Schooling: IEPs and 504 Plans in a Pandemic

DREDF provides updates on legislation and policy, sample templates for use in corresponding with districts, and articles on topics related to education and health care for individuals with disabilities. (Virtual IEP Meeting Request for COVID-19 Contingency Plan)

March 12, 2029 Questions and Answers about Providing Special Education from the Department of Education

March 21, 2020 Supplemental Fact Sheet from the Department of Education

Wrightslaw COVID-19 Parent Advocacy Fact Sheets

Learning Differences

International Dyslexia Organization: (Free, Downloadable) Dyslexia and Reading Disabilities Resource Guide for Families and Educators Affected by COVID-19

Learning Disabilities Association of America COVID-19 Resources Page

This includes several resource documents and webinars pertaining to supporting students with disabilities during COVID-19.

LD Online

LD OnLine is a national educational service of WETA-TV, the PBS station in Washington, D.C. that includes resources and articles on a range of topics related to learning disabilities as well as AD/HD.

Understood.org

Understood.org provides articles that explain learning differences and related issues in an accessible manner for families, individuals with learning differences, and professionals.

Motivation, Coping Strategies, Social Skills, and Behavior

Lives in the Balance

Dr. Ross Green’s Collaborative Proactive Solutions model offers families and school staff concrete strategies for helping understand the ‘why’ of a child’s behavior, to identify “lagging skills,” and to collaboratively come up with a plan for change. The Explosive Child Podcast, Episode 25, Collaboration in Trying Times

Making Social Learning Stick

This website includes free downloadable schedules, visual supports, articles, and videos related to supporting learners at home during COVID-19.

Social Thinking Free Stuff for Use at Home and School/Social-Emotional Support Strategies

Resources include read Aloud Books and Thinksheets, video lessons, webinars, and articles.

Zones of Regulation

Created by an Occupational Therapist, the Zones of Regulation is a framework designed to foster self-regulation and emotional control. This site includes free downloadable resources as well as free webinars showing how to adapt resources for home during Distance Learning.

Positive Parenting During COVID-19

World Health Organization Parenting During the Time of Covid-19

To help parents interact constructively with their children during this time of confinement, these 12 one-page tips for parents cover planning one-on-one time, staying positive, creating a daily routine, avoiding bad behavior, managing stress, managing anger, how to encourage play, and talking about COVID-19.

Stress, Resilience, and Mental Health Topics

American Psychological Association COVID-19 Resources

Resources from the American Psychological Association on managing stress and coping during this pandemic.

Child Mind Institute

Articles on a range of topics, including learning disabilities, autism, anxiety, depression, and mood issues.

Greater Good Guide to Well-Being During the Coronavirus

Discover science-backed practices for more resilience, connection, and well-being, with step-by-step instructions on how to implement them in your life. Articles focus on reducing stress, managing anxiety, and fostering happiness.

Greater Good Article: How to Reduce the Stress of Homeschooling on Everyone

National Suicide Prevention Lifeline

The National Suicide Prevention Lifeline provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week. Call 1-800-273-8255 or visit their website to chat with a crisis counselor.

Right Now I’m Fine

This free book is for anyone affected by worries, fears, discomfort, or nagging thoughts about the Coronavirus (Covid-19). This is a scary time in the world, full of uncertainty and changes. But the good news is, there are things that we can do to take good care of ourselves. This book explains what you can do to keep your mind and body calm now and during any hard time.

Talking with Children about Covid-19

My Hero is You: How kids can fight COVID-19!

With the help of a fantasy creature, Ario, “My Hero is You, How kids can fight COVID-19!” explains how children can protect themselves, their families and friends from coronavirus and how to manage difficult emotions when confronted with a new and rapidly changing reality.

National Association of School Psychologists: Helping Children Cope with Changes During Coronavirus

Traumatic Stress Network: Supporting Children During Coronavirus

Offers ways to support children and talk to them about COVID-19. This fact sheet describes how to start a conversation with children about COVID-19, correct inaccurate information, encourage children to ask questions and how to answer them, help children self-regulate, and outlines common reactions, how to stay connected, practice self-care, and what to do if you need extra help.

Why We Stay Home: Suzie Learns about Coronavirus

In this book geared to preschool-2nd grade students, Suzie is really excited to be able to stay home with her Mommy, Daddy, and older sister Millie! When Suzie expresses this to Millie, she explains to Suzie why they have been staying home with a quick lesson about the Coronavirus.

Other Resources

Special AXYS Newsletter: Resources for Distance Learning, Keeping in Touch, Staying Relaxed & More

School’s Out! Now What? Presentation Slides

Rick Frith2022-08-09T14:15:16-04:00Tags: Distance learning, Education|

Education

Most children and adolescents whose development is affected by having an X or Y variation are eligible for special education services. US federal law, the Individuals with Disabilities Education Act (IDEA) includes a variety of safeguards and options including Part C which provides for services to children birth to 3 years of age, and Part B which mandates a free public education for children with special needs who qualify from the ages of 3 to 21.

IDEA requires a multidisciplinary evaluation to determine if the child qualifies for special education services. This means that professionals from a variety of fields (medicine, psychology, occupational therapy, etc.) and the parents of the child collaborate to assess the child’s strengths and needs and determine appropriate educational services.

Every child eligible for special education has either an Individualized Family Service Plan (IFSP, for children birth to age 3), or an Individualized Education Program (IEP, for children age 3-21). Both programs specify the details of a child’s educational plan.

Intervention varies and is based upon the child’s individual needs. Areas that may be addressed include: speech and language, cognition, behavior, sensory-motor and academics. Settings range from home-based programs for infants to a variety of school-based classrooms for older children and adolescents.

Resources

This section provides a series of links to other resources that may be useful to some persons dealing with X and/or Y aneuploidy conditions. AXYS is aware that there is wide variability in the signs and symptoms associated with these conditions and not everyone will require the same resources. However, we’re hopeful that a number of these resources may be useful to a significant percentage of this population.

AXYS Resources for Distance Learning During COVID-19 and Beyond

AXYS Consensus Document: Educational Guidelines, IEPs, and School Services for Children with X & Y Chromosome Variations

Photo of a classroom

General Information for All Variations

ADHD Symptoms in Children and Adolescents with Sex Chromosome Aneuploidy: XXY, XXX, XYY, and XXYY

Everything You Never Knew About the ADHD Brain

Secrets of the ADHD Brain: Why We Think, Act, and Feel the Way We Do

Understanding Tests and Measurements for the Parent and Advocate

National Center for Learning Disabilities

Depression and Bipolar Support Alliance (DBSA)

Think College – College Options for People with Intellectual Disability

PACER Center

Wrightslaw: Special Education Law, 2nd Edition
By Peter W.D. Wright & Pamela Darr Wright

Special Education Law, 3rd Edition
By Nikki L. Murdick & Barbara C. Gartin, et al.

Steps to Independence: Teaching Everyday Skills to Children with Special Needs
By Bruce L. Baker & Alan J. Brightman

1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, Revised and Expanded 2nd Edition
By Ellen Notbohm & Veronica Zysk, et al.

Autism: Asserting Your Child’s Rights to a Special Education
By David A. Sherman

Functional Behavior Assessment for People With Autism: Making Sense of Seemingly Senseless Behavior
By Beth A. Glasberg

Inclusive Programming for High School Students with Autism or Asperger’s Syndrome: Making Inclusion Work for Everyone! [Paperback]
By Sheila Wagner

The Power to Spring Up: Postsecondary Education Opportunities for Students with Significant Disabilities
By Diana M. Katovitch

Realizing the College Dream with Autism or Asperger Syndrome: A Parent’s Guide to Student Success
By Ann Palmer

Self-Help Skills for People with Autism: A Systematic Teaching Approach
By Stephen R. Anderson, Amy L. Jablonski, et al.

Visual Supports for People with Autism: A Guide for Parents and Professionals
By Marlene J. Cohen & Donna L. Sloan

Contactgroep Triple X Syndroom (English language version of the Dutch website)

Letter of Introduction for New Teachers

48,XXYY

A New Look at XXYY Syndrome: Medical and Psychological Features

Transitioning to Adulthood – Part 1: Laying the Groundwork

Transitioning to Adulthood – Part 2: Teens and Young Adults

Letter of Introduction for New Teachers

Other Variations

Letter of Introduction for New Teachers

IEP Resources

Individualized Education Program (IEP): Summary, Process, and Practical Tips

OT, SLP, AT & The IEP… Making Sense of the Alphabet Soup

IEP and 504 Accommodations

IEP and 504 Questions

New Guide Offers Road Map To IEP Process

Understanding an IEP for Your Child

ED.gov – A Guide to the Individualized Education Program

KidsHealth – IEPs

Kids Together, Inc. – IEPs

Bridges4Kids – IEP Goals and Objectives Bank

Wrightslaw

Wrightslaw: The Special Education Survival Guide: From Emotions to Advocacy, 2nd Edition
By Peter W. D. Wright & Pamela Darr Wright

Wrightslaw: All About IEPs
By Peter W. D. Wright and Pamela Darr Wright and Sandra Webb O’Connor

Wrightslaw: IDEA 2004
By Peter W.D. Wright and Pamela Darr Wright

The Complete IEP Guide: How to Advocate for Your Special Ed Child
By Lawrence M. Siegel

The Everyday Guide to Special Education Law
By Randy Chapman

IEP and Inclusion Tips for Parents and Teachers
By Anne I. Eason and Kathleen Whitbread

Nolo’s IEP Guide: Learning Disabilities
By Lawrence M. Siegel

Writing Measurable IEP Goals and Objectives
By Barbara D. Bateman and Cynthia Herr

Negotiating the Special Education Maze: A Guide for Parents and Teachers (4th Ed.)
By Winifred Anderson, Stephen R. Chitwood, et al.

The Goal Mine: Nuggets of Learning Goals and Objectives for Exceptional Children
By Donald Cahill and Maureen Cahill

Special Needs Advocates & Attorneys

Special Needs Advocate & Attorney Directory

Early Intervention

Early Intervention for Infants and Toddlers with X & Y Variations

The Early Intervention Dictionary, 3rd Edition: An Interdisciplinary Guide to Terminology
By Jeanine G. Coleman

Right from the Start: Behavioral Intervention for Young Children with Autism (2nd Ed)
By Sandra L. Harris & Mary Jane Weiss

Speech Therapy

Klinefelter Syndrome Speech Therapy Tips (Living with XXY)

Home Schooling

About Homeschool

Homeschool.com

Home School Legal Defense Association
(The HSLDA is a legal support organization that specializes in home school issues and offers some free resources. However, please be aware that they may suggest that you become a paid member to receive full service and information. Users should be aware of their model and proceed accordingly.)

The Home School Mom

Homeschool Central (Additional resources for special needs)

Time4Learning

SEA Homeschoolers (Secular, Eclectic, Academic): They hold conferences, workshops, webinars, and have a very helpful website covering most aspects of homeschooling including transitioning out of high school to whatever comes next.

Most states have Facebook groups for homeschoolers; for example Delaware has groups for all homeschoolers (Homeschool Delaware) and for specifically secular homeschoolers (Delaware Secular Homeschoolers) to offer support, organize live, in person classes, arrange meet ups and park days and field trips, organize laboratory classes, discuss scholarships, local laws, swap materials at lower cost, and more.

The Well-Trained Mind: From the author of “Rethinking School” and featuring some really innovative approaches for different types of learners, this site includes sections for children with learning differences (See the section on “Differences, Disorders, and Disabilities”) and giftedness as well as the average kid. The author, Susan Wise Bauer, literally wrote THE major book on homeschooling (“The Well Trained Mind”) and it is popular with both religious and secular families for providing ideas about thinking about education as well as practical, everyday strategies for making a homeschool plan. The author is a professor at the College of William and Mary, homeschools her own kids, and was homeschooled herself. Related to this site The Well-Trained Mind Academy, which offers live online classes in most middle and high school subjects for a pricey, but generally worthwhile fee. In those classes, students receive graded papers, instructor feedback, and classroom interaction online. The author has written some specific curricula that seems to suit kids with issues such as dysgraphia and writing difficulty, too— I’m a big fan of her elementary program, “Writing With Ease.”

Online G3 is a site for online homeschool courses for gifted kids (because yes, kids with X and Y variations can also be educationally gifted despite their learning differences— this is called being 2E, or “twice-exceptional”). This site is unique in that it provides good course descriptions for its live, interactive classes taught by experienced teachers, then allows parents to make the decision about whether a particular class is right for their child— no expensive test or proof is required. It is recommended that parents be realistic, as the classes will appeal more to gifted kids who tend to “drive the bus” than to reluctant learners, but for the right kid, they are fun, encouraging, interactive, varied, and challenging.

Bravewriter offers online classes and curriculum for purchase for teaching by the parent for helping anxious writers or encouraging the aspiring author. Online classes encourage kids to comment (kindly) on one another’s work, even if a particular student is only typing out one or two-sentence responses at first, and the instructors ask questions to help draw out more detailed answers, conversationally, in a message-board format.

CK-12 is a FREE website with high-quality textbooks available online, with many upper-level books including lab manuals and teacher manuals as well (also free). Because the books are online, they include embedded media. Parents can sign up for a teacher account and create a program to assign to their kids and monitor progress, or do it more informally.

There are other resources available, and one of the parents of an XXY child has offered to help other parents looking for more information. You can reach Jen Driscoll at XXYMidAtlantic@gmail.com with questions.

Tools for Educators

A Model for Assessment Accommodations for Individuals with Intellectual and Developmental Disabilities

Executive Function e-booklet

Letter of Introduction for New Teachers: XXY

Letter of Introduction for New Teachers: XYY

Letter of Introduction for New Teachers: Trisomy X

Letter of Introduction for New Teachers: XXYY

Letter of Introduction for New Teachers: XXXY

Autism in Your Classroom
By Deborah Fein & Michelle A. Dunn

Teaching by Design: Using Your Computer to Create Materials for Students With Learning Differences
By Kimberly Voss

You’re Going to Love This Kid! Teaching Students with Autism in the Inclusive Classroom (2nd Edition)
By Paula Kluth

A Picture’s Worth: PECS and Other Visual Communication Strategies in Autism
By Andy Bondy & Lori Frost

Reading and Writing

Corrective Reading

Dolch Sight Word Lists and Activities

PALS Reading from the Fuchs Research Group

Reading A-Z

Older Struggling Readers: What Works?

Read Naturally

Learning without Tears

Physical Education

Physical Education for Students with Disabilities: Wrightslaw (if page does not open in browser, remove “https” from the URL in the address bar)

7 Ways to Include a Student with Special Needs in Physical Education

Adapted Physical Education Guidelines
Note: While these guidelines are specific to California schools, we think readers may find them helpful no matter where you live.

Sexual Education and Awareness

Advocates For Youth – Sex Education for Physically, Emotionally, and Mentally Challenged Youth

Sexuality Education for Students with Disabilities

Smartphone and Tablet Apps

Apple in Education

Moms With Apps

Special thanks to the National Fragile X Foundation for the use of some content.

Disclaimer: AXYS provides the above information to assist families and professionals in providing the best, possible educational experience for children with an X or Y variation. Inclusion in this list of resources does not imply endorsement by AXYS of any product or service and parents are encouraged to fully research products and services before making any commitments or purchases.

Rick Frith2022-08-11T13:53:18-04:00Tags: Education|

A Guide to Special Education Services in Texas

Title: IDEA – The Manual for Parents and Students About Special Education Services in Texas

Date of Publication: September 2011

Rick Frith2022-03-15T13:38:55-04:00Categories: All Variations|Tags: Education, IEP|

Parents Advocate for Son’s Educational Needs

Date of Publication: May 2017

A couple in the U.K. are fighting to help their son with 47,XYY get what he needs to be successful in school. From the original article:

“Holly Mayatt, of Sandown Road, said her son Harry, who attends All Saints Junior Academy, is struggling more and more at school due to him not being given specialist provision which she has asked for.

Harry has XYY syndrome, a rare chromosomal disorder. Symptoms may include learning disabilities and behavioural problems such as impulsivity. He also has SPD (sensory processing disorder).”

Rick Frith2022-03-15T13:38:47-04:00Categories: 47,XYY|Tags: Education|

Individualized Education Program (IEP): Summary, Process, and Practical Tips

Article Title: Individualized Education Program (IEP): Summary, Process, and Practical Tips

Author: Goodwin Procter, Autism Speaks

Date of Publication: August 19, 2011

After months of research, a team of lawyers at Goodwin Procter LLP has generously put together a helpful guide to help families understand the IEP process as their loved ones head back to school: Individualized Education Program (IEP): Summary, Process and Practical Tips. This 26 page guide contains an IEP timeline and clearly lays out the steps to take throughout the IEP process. The guide also includes lots of tips, resources, and answers to FAQs.

Visit the Autism Speaks posting associated webpage.

Rick Frith2022-03-15T13:38:38-04:00Categories: All Variations|Tags: Education|