What is Fragile X?

"Fragile X syndrome is a genetic condition involving changes in part of the X chromosome."

I homeschool two of my grandchildren. My granddaughter is twelve; she has learning disabilities due to Fragile X. So, her levels are all over the place: second-grade reading; third to fourth-grade math. Science and social studies are scaled-down versions of what her brother is learning about, so they are both on the same concept. It’s a lot of work but a lot of fun.

According to the U.S. Department of Health and Human Services, “Fragile X syndrome is a genetic condition involving changes in part of the X chromosome. This condition causes a range of developmental problems including learning disabilities and cognitive impairment. It is the most common form of inherited intellectual disability in males and a significant cause of intellectual disability in females.”

Symptoms of Fragile X involve developmental problems including: intellectual disability and delayed speech and language development; anxiety; attention deficit disorder (ADD); Oppositional defiant disorder (ODD); Intermittent Explosive Disorder (IED); features of autism spectrum disorders that affect communication and social interaction; and seizures. Physical characteristics can include a long narrow face, oversized ears, a large jaw and forehead, unusually flexible fingers, and flat feet. These characteristics are more prevalent in males than in females. Becca has three older brothers, two of which are affected by Fragile X. The oldest also has Type I Juvenile diabetes. The third boy is the only one of the four who was not affected.

The symptoms of Fragile X are usually less severe in females than they are in males. This is most likely because girls have two X chromosomes while boys only have one. Usually in girls, only one of the X chromosomes is damaged, allowing the second X chromosome to compensate for the damaged one. They still have many symptoms, but they are not as severe as those present in the affected males.

My granddaughter’s development has been impaired but not stopped. She is still learning to read but has made significant strides this year; her math skills are between a third to fifth-grade level, depending on the concept she’s working on. She loves math, as well as science and art. Her artistic skills are well-developed. She does not have many of the symptoms her older brothers display.

Her brothers, ages seventeen and nineteen, are still learning at kindergarten and first-grade levels. Their speech has improved over the years; the seventeen-year-old, who couldn't talk at all about eight years ago, can now communicate albeit at a one to two-year level. The oldest child speaks well but communicates by repeating conversations he has learned from watching cartoons and movies.

Educating these wonderful children has been a challenge, that is true. And yet, they have intelligence that many with "normal" capabilities do not have. For instance, the nineteen-year-old can look at a picture on the lid of a puzzle box once and put the puzzle together, often in a matter of minutes, without ever looking at the picture again. The second boy can build amazing figures with Legos that are symmetrically accurate. Becca can draw stunning pictures and can sing beautifully.

The two older boys will unfortunately not be able to function on their own for the rest of their lives. They will have to have guardians to watch over them should anything happen to their parents. On the other hand, my granddaughter will be able to live a full life, although she will need to continue learning the basics of academics and life in general. She will still need someone to look after her educational and financial needs and guide her through securing a job. She will especially need someone to guard her against predators who would try to take advantage of her innocence and her naivete.

These precious children are the light of my life. They have been a Godsend to our family and are very precious to us. We have learned so much about love, compassion, and life having spent almost twenty years with these children. They are our life and inspiration, and it has been a fantastic journey.