Most children and adolescents whose development is affected by having an X or Y variation are eligible for special education services. A 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.
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 (see definition below). 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.
• 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
• 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
• 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
• 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
• 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.)
• Homeschool Central (Additional resources for special needs)
• 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.
• Autism in Your Classroom
By Deborah Fein & Michelle A. Dunn
• A Picture’s Worth: PECS and Other Visual Communication Strategies in Autism
By Andy Bondy & Lori Frost
• Physical Education for Students with Disabilities: Wrightslaw (if page does not open in browser, remove “https” from the URL in the address bar)
• 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.