Some blogs are easier than others to write. This week trying to figure out a topic was a piece of cake: Fragile X Awareness Month! It was officially Fragile X Awareness Day on July 22 as it is every July 22. As a member of the Mandt faculty for the past 12 years and a user of the Mandt program since 1987, I truly believe in the system and the tenants of treating people with dignity and respect. As a former direct care staff, I saw the program do amazing things in my relationships with consumers. As a previous manager and administrator, I saw the values permeate organizational culture and change lives.
My biggest growth as a fan of The Mandt System came 5 years ago when my middle son Tyler who is now seven was diagnosed with Fragile X Syndrome. What I used to teach and try to follow as an employee, became daily living as a parent of a special needs child. The need for a program to change lives has become very real for me as I look into Tyler’s services, schools he will attend, and his future residential needs. My wife Jammie and I have become actively involved as parents of a child who is impacted by fragile X into the fragile X community. It’s been called “the best group of which you never wanted to be a part”. We love and adore our fragile X family. However, it is sad for me when I mention fragile X in my trainings around the world and there are still several people in developmental disability serves and education who come back with “fragile what?”
Since fragile X is the leading known genetic inherited cause for intellectual disabilities, being unknown is somewhat saddening for me. Since it is fragile X awareness month, I felt I would use this opportunity to help educate on the subject. Below are 10 fragile X facts and I would encourage you to learn more about it. Feel free to go to http://www.fragilex.org
1. Fragile X syndrome is the leading known genetic cause of autism.
2. Fragile X syndrome occurs in both males and females. Females generally have less severe symptoms.
3. Fragile X syndrome can cause developmental and language delays, learning impairment, and behavioral and mental health issues.
4. Fragile X-associated disorders (FXDs) are a group of related genetic conditions that can affect family members in different ways. FXDs include: fragile X syndrome (FXS) fragile X-associated primary ovarian insufficiency (FXPOI) fragile X-associated tremor/ataxia syndrome (FXTAS).
5. As many as 1 in every 250 women are carriers of the Fragile X gene.
6. All Fragile X conditions are genetic, passed through generations (often unknowingly). You cannot catch a Fragile X Disorder by being friends with someone who has one. (People with Fragile X make awesome friends!)
7. Fragile X occurs when there is a change (or mutation) in the FMR1 gene. Everyone is born with the FMR1 gene, which is on the X chromosome.
8. Common features of fragile X syndrome include: Physical: Large ears, long, narrow face, prominent forehead or chin, high palate (roof of mouth), flat feet, seizures, crossed/lazy eyes, tendency for ear infections, hyperflexible joints. Behavioral: Developmental delay, learning and intellectual disabilities, ADHD, hand-flapping and/or biting, poor eye contact, shyness, anxiety, behavior issues, speech/language delay, rapid, repetitive speech, increased sensitivity to sounds, touch, crowds and texture.
9. Approximately 1million Americans carry the Fragile X mutation, including approximately 100,000 with fragile X syndrome, and are at risk for developing a Fragile X-associated Disorder.
10. Common strengths associated with fragile X syndrome are a good visual memory, sense of humor, desire to be helpful, empathic nature, and gift for mimicry. They do well when given visual cues, often love to help and learn from peer modeling.
Tim Geels – Director of Organizational Instruction