In the past decade or so, we have seen MG & YA books about “special” people, those with “handicaps.”
Lynn E. McElfresh wrote Can You Feel the Thunder from the Point of View of the brother of a deaf/blind girl, & Cynthia Lord wrote Rules, from an autistic boy’s sister’s POV. The genre moved forward and we found ourselves in the actual POV of the “special” person: Francisco X. Stork’s Marcelo in the Real World, Kathryn Erskine’s Mockingbird, & Sharon Draper’s Out of My Mind. These authors provided powerful stories, which let us inside the frustration & struggle of these individuals.
Every season, more books of this kind are released. It has raised awareness of people who are “different.” I was thrilled. I have special reasons to be drawn to these books—some very special people in my own life.
In 2000, my daughter Wendy worried because her 18-month-old son didn’t walk yet. She pushed his pediatrician for answers until they were sent to a neurologist, who examined him and found him physically perfect. But the doctor drew blood to check on other things—and one more blood test just in case.
Weeks later, by which time her son did walk in his own clumsy fashion, she was informed that the final blood test revealed her son has Fragile X. Fragile what?! We’d never heard of it. Wendy was sent to the genetics department at the local Children’s Hospital, where she learned plenty. We all did. We learned that my grandson was indeed “Special Needs.” We also learned that Fragile X is genetic and Wendy carries the gene. She cried long and often over the fact that she had passed this trait to her son. It was tough on her.
But we are a big family. I have four children, am one of seven, and my husband is one of seven. This diagnosis would have far-reaching effects. Blood tests began, and we learned that Kelly, our other daughter, also carries the gene. Her daughter was nearly two by the time test results were in. That grandchild also has FXS (Fragile X Syndrome). In those intervening months since we had begun to educate ourselves on this genetic villain, we had suspected it. Our granddaughter didn’t talk—and FXS causes speech problems.
FXS is a “spectrum” disorder, which means it has a broad spectrum of symptoms. In addition to speech problems, it can cause mild learning disabilities, extreme shyness, sensory issues, hand flapping, autism and severe mental retardation. We were overwhelmed.
My blood test showed I don’t have Fragile X, which was a relief to my sons. Since the X chromosome is the one involved, it cannot be passed father to son. A mother can pass it to either gender, but a father can only pass it to his daughters. While my sons were relieved not to carry the gene, my husband was devastated to know he does. It has been difficult for him.
Our past dozen years have been ones of learning, acceptance and adjustment. Sensory issues make my grandson uncomfortable at an amusement park. (He can’t tolerate loud noise or crowds.) We no longer take him there. And routine is important for these special ones, so while dozens of Disney classic cartoons gather dust on my shelf, my grandkids watch the same SpongeBob or Scooby Doo cartoon three times in a row.
Our grandson (who was diagnosed on the autistic spectrum) has to have his “Bobs,” small plush toys that he has carried since he was small. They provide him comfort when the outside world overwhelms him, and they are mended repeatedly from the too-much-love-and-handling they receive.
Kelly gave us a new granddaughter in 2003, who also tested positive for Fragile X, but her symptoms are much milder than the two older grandchildren. She is very close to a “typical” child, and if we had not educated ourselves on these issues and hadn’t had her tested, she is the type who might have gone undiagnosed.
There are hundreds of stories I could tell you (and perhaps I will in future posts) about what these special kids have added to our lives (a few tears, but much, much joy). But this post is to raise awareness. When news stories say “there is no known cause of autism,” it isn’t always true. Sometimes Fragile X is the cause, and Fragile X can be detected with a blood test. No, there is no cure—as yet—for FXS, but once you know that you or a family member carries the gene, you can make educated decisions and seek early intervention. It helps to know what you’re dealing with.
A nun friend once told me that, “God gives special children to special people.” I am proud of the mothers that my daughters have become, and I feel quite blessed with my family.
To learn more about Fragile X, go to www.fragilex.org