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
Sex Chromosome Variations (Article from Exceptional Parent Magazine)
This is an article written by AXYS board member Ginnie Isaacs Cover, MSW, MBA for the July 2017 issue of Exceptional Parent magazine. It provides some general information on sex chromosome variations and highlights certain challenges parents can face in getting the appropriate care and assistance for their child.
On Noninvasive Prenatal Screening
“ACMG Releases Updated Position Statement on Noninvasive Prenatal Screening (NIPS) for Detection of Fetal Aneuploidy”—The American College of Medical Genetics and Genomics (ACMG), released a new position statement on July 28, 2016 that expands upon its 2013 recommendations on the use of NIPS in prenatal care. “ACMG continues to stress that NIPS is a screening rather than a diagnostic test and positive results should be followed by a diagnostic test such as chorionic villus sampling or amniocentesis,” wrote the paper’s lead author. Click Here.
Sibling Support
Recommended Reading: Tips From Parents and Adults for the benefit of others
- Rules (2006) by Cynthia Lord, a book for “sisters”
More about the book
About the Author - Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs (2005) by Kate Strohm, a book for parents and siblings
More about the book
About the Author
Note: These are unofficial recommendations from parents who have found these books, articles, websites and other resources helpful in some way. When possible, we will provide an Amazon.com link for ease of purchase, a link to the description of the book, and a link to a description of the author. Unless otherwise stated, AXYS is not involved in the sale, and we recommend that you shop around before making your purchase.
General Support for Parents
Recommended Reading: Tips From Parents and Adults for the benefit of others
- A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs by Cindy Dowling
More about the Book
About the Author
Note: These are unofficial recommendations from parents who have found these books, articles, websites and other resources helpful in some way. When possible, we will provide an Amazon.com link for ease of purchase, a link to the description of the book, and a link to a description of the author. Unless otherwise stated, AXYS is not involved in the sale, and we recommend that you shop around before making your purchase.
EEOC Announces Final Bipartisan Regulations for the ADA Amendments Act
These changes to US laws and regulations may be helpful to those of you who are seeking disability benefits or protections:
EEOC Announces Final Bipartisan Regulations for the ADA Amendments Act
The U.S. Equal Employment Opportunity Commission’s (EEOC) final regulations to implement the ADA Amendments Act (ADAAA) are now available on the Federal Register website. Like the law they implement, the regulations are designed to simplify the determination of who has a “disability” and make it easier for people to establish that they are protected by the Americans with Disabilities Act (ADA).
Clothing for Kids Who Have Sensory Issues
Some children have severe sensory issues. There are many resources for special clothing for these children. These two sources were recommended by a mom.
Her comment: “Here are a couple of links to some places that sell shirts with NO TAGS, and FLAT SEAMS and socks WITH NO SEAMS!”
http://www.softclothing.net/
http://www.sensorystorecanada.com/ (Note: This resource may be temporarily unavailable–“closed for renovations” 8/4/11)
Important Note: AXYS does not endorse or vet resources of this type. We do not receive any compensation for posting these links, nor do we get any portion of their sales. They are shared simply as an FYI. Please shop carefully.
Resource: Independent Publishers of Accessible Books That Make a Difference
Recognized as the leading publisher on autism and Asperger syndrome, they publish in a range of areas including social work, education and arts therapies.
Jessica Kingsley Publishers books are for parents, professionals, academics and general readers.
Letter to the Editor: In response to Wall Street Journal and NY Times
In response to:
“New Tests for Newborns, And Dilemmas for Parents” by Amy Dockser Marcus
Wall Street Journal, July 26, 2011
“Test Can Tell Fetal Sex at 7 Weeks, Study Says” by Pam Belluck
NY Times, August 9, 2011
AXYS submitted this letter to the editor:
“AXYS serves individuals who have one of the most prevalent and yet confoundingly unknown genetic conditions, sex chromosome aneuploidy. The most common of these conditions is 47,XXY, also known as Klinefelter Syndrome. There are many other aneuploidies, affecting 1 in 500 males and females in total. Life is certainly worth living for these individuals. Early diagnosis leads to effective interventions that vastly improve lives, yet the majority of individuals with these conditions go undiagnosed for years—even a lifetime. Misdiagnosis and resulting mistreatment are common and lead to unwarranted suffering. One man spent 52 years diagnosed with bipolar disorder only to discover by accident he is 47,XXY. He was transformed from suicidal to exuberant when he received the right treatments. Undiagnosed individuals are susceptible to myriad comorbid conditions, such as heart disease and cancers, which can strike by surprise. Those with an accurate diagnosis can watch for and address these problems before they become life-threatening. AXYS strongly urges rapid development and deployment of early diagnostic testing to detect these conditions. In the case of X and Y chromosome variations, ignorance most definitely is NOT bliss.”
Please support our effort by submitting your letter to the Wall Street Journal at these two email addresses:
Dear Abby, Dear Abby..
AXYS was founded on the response to a letter to Ann Landers sent by our founder, Melissa Aylstock. David Drexler, a long-time volunteer with AXYS and member of our communications committee, has written a beautiful, compelling letter to Dear Abby. Please write to Dear Abby and share your letter with us.
David’s letter:
Dear Abby,
I’m writing you today to alert your readers to chromosome anomalies that affect one in five hundred people, male and female. Although they are the most common of the chromosome anomalies they are also seldom diagnosed, most often by amniocentesis or in a fertility workup.
Every cell of a normal body has 23 pairs of chromosomes and on those chromosomes are the genes that control who and what we are. The sex chromosomes (23rd pair) dictate sex. A normal male has XY chromosomes and a normal female has XX. For reasons we don’t know, in some cases there are more than two sex chromosomes with an extra X, called 47,XXY or just XXY. There can also be more than two Xs and more than one Y for example trisomy X or 47,XXX.