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Resources from the May 2020 webinar “Schools Out! Now What?”

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.

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 (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.

• 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

• The Brain-Behavior Connection In Children with ADHD

• IDEA—the Individuals with Disabilities Education Act | Center for Parent Information and Resources

• 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

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.

The Benefits of Physical Education for Children with Special Needs

• 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.

Apple in Education

Assistive Technology for Education – iOS /Android/Chrome Apps & Browser Extensions

Moms With Apps

Aneuploidy

(an·eu·ploi·dy) (an-yu-“ploi-dE)

In everyone’s body, each cell contains tiny twisted strings of molecules called chromosomes that contain genes, which in turn tell cells how they will grow and what they must do.  Typically, humans have 23 pairs of chromosomes (46 chromosomes in the aggregate), and each parent commonly contributes one chromosome to each pair.  These chromosomes are numbered and arranged when they are analyzed by labs in a test known as a karyotype.  The 23rd pair, for example, are known as the sex chromosome pair.  Except in certain instances of X and/or Y chromosome aneuploidy, a mother and father each contribute a single sex chromosome to the child. Thus, girls commonly have two X chromosomes (one from mother and one from father), while boys commonly have one X (from mother) and one Y (from father) chromosome.

Occasionally, a cell division anomaly known as “non-disjunction” may result in some (in the case of mosaicism) or all cells having 44, 45, 47, 48 or 49 chromosomes.  These chromosomal states in which one or more whole chromosomes are either missing or are present in more than the typical number are referred to as an “aneuploidy” or plural, as “aneuploidies.”

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.

2020-05-28T15:29:59-04:00

Clinics

ACRC_Logo
In 2015, the AXYS Board of Directors voted to approve funds to help develop the AXYS Clinic and Research Consortium (ACRC). This exciting development committed us to organize, fund and expand a clinical consortium that operates as independent clinics which collaborate with one another, share informational resources, and explore opportunities to participate in joint research projects. In addition, AXYS organizes annual meetings of the consortium where members meet to discuss topics important to the SCA community.

One goal of AXYS is to ensure that all families impacted by X and Y chromosome variations have access to the best available evaluation and treatments. The ACRC is an important means of achieving that goal.

For help in determining which clinic might be most appropriate for you or your family, please read the following and/or call us at 1-888-999-9428.

Types of Clinics

Due to the many X and Y Chromosome variations, not all clinics specialize in all conditions. Below is a listing of ACRC clinics. The specific conditions and patient ages served by the clinic are noted in the description.

Multidisciplinary Clinics

Some clinics are multidisciplinary in their services. A multidisciplinary clinic provides a comprehensive, integrated approach to caring for individuals. Patient visits are organized to provide access to all necessary medical, psychological, and therapy disciplines in one visit. Professionals then meet, discuss each case, then collaborate to develop a fully coordinated care plan tailored to the patient. Some clinics also provide “take-home” materials for local medical, therapy and school professionals. Please review each clinic’s website and/or description of its services for information regarding its specific approach to seeing patients. If unsure about the types of services provided, be sure to ask at the time an appointment is scheduled.

California

Los Angeles
Cedars Sinai Hospital: eXemplarY Kids Clinic
X and Y variations seen: All
Ages seen: Birth to age 21
Medical Director: Co-Directors: Yana J. Tavyev MD and B. Michelle Schweiger, DO, MPH
Appointments/Clinic Coordinator: TBA (please email B. Michelle Schweiger with any questions)
310 423-7779 (appointments) / 310-423-9935 (clinic coordinator) / 310 423-7940 (office)
Hospital website

Stanford
Stanford University School of Medicine
X and Y variations seen: All
Ages seen: Children and Young Adults
Medical Co-directors: David Hong, MD and Allan Reiss, MD
Appointments: Clinic Coordinator – Reiko Riley, reikor@stanford.edu
Hospital website

Colorado

Denver
Children’s Hospital Colorado: eXtraordinarY Kids Clinic
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Nicole Tartaglia, MD
Clinic Coordinator: Susan Howell, MS, MBA, CGC
Appointments: 720-777-8361 or extraordinarykidsclinic@childrenscolorado.org
Clinic website

Delaware

Wilmington
Nemours Alfred I. duPont Hospital for Children: eXtraordinarY Kids Clinic
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Judith Ross, MD
Appointments/Clinic Coordinator: Karen Kowal, 215-955-9008, kkowal@nemours.org
Clinic website | Clinic brochure

Georgia

Atlanta
Emory University: The eXtraordinarY Clinic at Emory University
X and Y variations seen: All
Ages seen: Birth to young adulthood
Medical Director: Amy L. Talboy, MD
Appointments: 404-778-1363 or 800-366-1502
Website

Illinois

Chicago
Rush University Medical Center
X and Y variations seen: All
Ages seen: Birth to young adulthood
Medical Director: Elizabeth Berry-Kravis, MD, PhD
Clinic Coordinator: Angel Wang
Appointments: Yasmin Roman, 312-942-3034

Maryland

Baltimore
Johns Hopkins: 47,XXY Klinefelter Syndrome Center
X and Y variations seen: Klinefelter syndrome; male infertility.
Ages seen: Children and adults
Medical Director: Adrian Dobs, MD
Appointments: Hopkins USA Concierge Service, 855-695-4872 (Monday-Friday, 8 a.m. – 6 p.m. EST)
Clinic website

Massachusetts

Boston
MassGeneral Hospital Klinefelter Syndrome Clinic
X and Y variations seen: Klinefelter syndrome (47,XXY), 47,XYY, 48,XXYY, 48,XXXY, and other male X and Y chromosome variations
Ages seen: Prenatal through adulthood
Medical Director: Frances High, MD, PhD and Frances Hayes, MBBCh, BAO
Appointments/Clinic Coordinator:  Ashley Wong, MS, CGC, 617-398-0019, awong@mgh.harvard.edu
For MGH Trisomy X care, call Medical Genetics at 617-726-1561
Clinic website

Read more about this clinic in this AXYS Clinic Spotlight Article

New York

New York City
Weill Cornell Medicine Klinefelter Syndrome Clinic, Weill Cornell Medical College
X and Y variations seen: All
Ages seen: Birth to young adulthood
Co-Directors: Lilian Cohen, MD MPH (Genetics) and Peter Schlegel, MD (Urology)
Clinic Coordinator: Lilian Cohen, MD MPH
Clinic website

Ohio

Cleveland
eXtraordinarY Kids Care at Cleveland Clinic
X and Y Variations seen: XXY and other X & Y variations
Ages seen: Prenatal to young adulthood
Medical Director: Andrea Mucci, MD
Appointments/Clinic Coordinator: Stephanie LeMasters, 216-444-7987
Clinic website

Pennsylvania

Philadelphia
Children’s Hospital of Philadelphia: Klinefelter and All XY Variations Program
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Maria Vogiatzi, MD
Clinic Coordinator: Michelle McLoughlin, MSN, CRNP, CPNP-AC
Appointments: Meagan Snow-Bailey, 215-590-3174
Clinic website

Read more about this clinic in this AXYS Clinic Spotlight Article


Single Specialty Clinics

The following clinics primarily focus on a single issue associated with having an X or Y variation and may not necessarily provide the comprehensive evaluation and treatment recommendations provided by the multidisciplinary clinics. If you’re unsure about the types of services provided, be sure to ask at the time you schedule your appointment.

Canada

Vancouver, British Columbia
Flannigan Fertility – Reproductive Medicine
X and Y variations seen: Male Infertility and Sexual Medicine. Genetic disorders leading to male infertility such as Klinefelter Syndrome, mixed gonadal dysgenesis (45X, 46XY), CFTR mutations leading to male infertility. Dr. Flannigan performs sperm retrievals, and fertility management.
Ages seen: Post-pubescent adult population
Medical Director: Ryan Flannigan, MD, FRCSC
Appointments: Judy Chiu, 604-875-5003
More information by email: clinic@ubcurology.com
Clinic website

North Carolina

Winston-Salem
Wake Forest Baptist Medical Center, Department of Urology and Center for Reproductive Medicine
X and Y variations seen: 47,XXY, 48, XXYY and other male gonadal dysgenesis (Puberty and fertility preservation management for X and Y variations)
Ages seen: Children, adolescents and adults
Medical Director: Hooman Sadri-Ardekani, MD, PhD
Other faculty: Stanley J Kogan, MD and Stuart S. Howards, MD
Appointments: 336-716-4131
More information by E-mail: hsadri@wakehealth.edu
Clinic website

2020-08-06T22:00:10-04:00

Research and Clinical Trials

research3

Toward Better Diagnosis and Treatments

Research is the lifeblood of all medical conditions that stand to be improved as we learn more about them. No serious advance can be made against diseases without carefully constructed scientific research. Research helps raise awareness, inspire hope, and lead to early diagnosis and effective treatments.

Many studies on X and Y variations take place simultaneously at research centers around the world. If you want to know more about individual studies, scroll down the page and click on the website or email links directing you, or simply follow the instructions listed for each study.

If you are new to these conditions and the nature of clinical trials, click here for more information.

Post New Trials

If you are the Principal Investigator or other responsible person for a study that you believe may be applicable to one or more of the X and Y variations that AXYS serves, we would be happy to post information concerning your research on our website.

Click here for more information.

Specific Research Announcements

For a regularly updated list of specific research recruiting announcements that are open and actively recruiting families, please click here.

2016-12-21T01:27:40-05:00

Prior Conferences

Every two years, AXYS sponsors a conference that brings together those with an extra X or Y chromosome variation, their parents or other family members, researchers, medical professionals and others. The conference features individual presentations, panel discussions, and plentiful opportunity for informal discussion and support on a wide range of matters relevant to our members and friends. Much of the material is of a timeless nature that can be highly informative and helpful to those new to the field.

2019 AXYS Family Conference, Atlanta, Georgia

2017 AXYS Family Conference, Aurora, Colorado

2015 AXYS Family Conference, Baltimore, Maryland

2013 AXYS Family Conference, Denver, Colorado

2019-07-18T15:18:51-04:00
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