Wendy Geiger knew her then 5-year-old son, Phil, wasn’t developing the way other children his age did.
Health care professionals passed it off as an outcome of medical issues Phil had as a baby and said to just be patient. It didn’t feel right, and then a friend of Geiger’s suggested she watch a PBS documentary about something called Fragile X syndrome. Suddenly everything made sense.
Craig Clohessy: Your now 15-year-old son, Phil, was diagnosed in 2010 with Fragile X syndrome. Can you explain what Fragile X is?
Wendy Geiger: Fragile X is the leading genetic cause of autism and developmental delay. ... About 60 percent of people with Fragile X are diagnosed with autism or sensory issues. Females are impacted a lot differently than males, because females have two X chromosomes. And what happens with Fragile X is that the production of a certain protein is shut off with the full mutation. So a female can get some of that protein made by her other X chromosome.
CC: Share more about what finally led to Phil’s diagnosis of Fragile X syndrome?
WG: Philip had open-heart surgery when he was 3 months old. We weren’t sure if part of the reason why he had a hole in his heart was a genetic cause, and so the doctors in Spokane did do a test in July of 2006 for DiGeorge syndrome (a chromosomal disorder that can cause heart defects). ... After the results came back negative for the DiGeorge syndrome, they said there didn’t appear to be a genetic reason. ... I felt like it shouldn’t have fallen through the cracks; we should have caught it at that time.
He didn’t walk until he was 2½ years old. He didn’t really talk much until he was 4. He wasn’t really developing a lot of the major milestones, and the medical community that was helping us with my son thought it was just because of the open-heart surgery.
We just happened to see the “Living with Fragile X” documentary on PBS one night, and the little children in that documentary had the same mannerisms and ear flapping and hand biting that Philip had. We finally asked a Spokane developmental pediatrician to test for Fragile X.
CC: Why is early diagnosis important?
WG:When you have a problem and you have a blindfold on, you can apply a lot of solutions that are costly, timely and not helpful. When you know exactly what the diagnosis is, you can get better connections and more efficiently serve that person and the whole family.
One of the things that Philip would do when he was a baby ... is he would bite me a lot on my shoulder, and I didn’t know what was going on. But after we got the diagnosis and I learned more about it, I realized he was just having a lot of anxiety.
Now when we go to family functions and receptions or whatever, we stay on the outskirts, and his anxiety stays down. If I go into the center of a group of people if he’s with me, he’s going to start biting his hand — he’s 15 so he doesn’t bite my shoulder anymore. But the little things like that would’ve been nice to know.
CC: You’ve been advocating for Fragile X since his diagnosis. What all are you involved with?
WG: The first conference that I went to was with the National Fragile X Foundation. It’s an international conference. It was hosted in 2012 in Miami, Fla. ... You’re around like 1,000 other professionals and parents that are just like you. And they know what your morning routine actually is, and so that’s really nice.
There’s also things that you can learn about: sensory diets, hyperarousal, dental care.
The National Fragile X Foundation has structured support groups throughout the United States, and at that time it was called Links — linking people together. They’ve restructured it and rebranded, and so each group doesn’t have its own logo now, they all have the same logo through community partnerships or contracts with the National Fragile X Foundation. They provide you books and brochures and research and newsletters. So I was a Links leader, and then I’d been involved with the Washington Fragile X Association.
We’re rechanging our name to the Northwest Fragile X Alliance because we’ve had some board members in the state of Washington who’ve moved to Idaho and Oregon, and we already really wanted to be involved with Idaho and Oregon, so why not put it in the name?
CC: On the career side of your life, you served 12 years at the Asotin County Sheriff’s Office as a corrections sergeant. You’re now a real estate agent. Why the change?
WG: I wanted to make the change, and I had planned that for about five years because I wanted to have a career change that would allow me to better serve my son. When he turns 18 or 21 he’ll be done with school, and I didn’t want to be working 12-hour shifts, graveyards.
Since I’ve quit working the jail and gotten into real estate, we’ve been able to do Special Olympics. We did our first Special Olympics this last winter, and he loved the basketball. We’ve been able to get physical and occupational therapists in our home every single week, and we’ve been steady with that for almost a year. So, it’s already paying dividends, and with COVID I’ve already been able to work from home. So it was a blessing in disguise with timing.
CC: Anything else you’d like to add?
WG: I feel like the sensory diet is something that I wanted to mention a little bit more about. We all have regulating systems so if we hear a really loud noise our bodies can get rid of what it felt like when that noise happened. When you have a sensory processing issue, your body doesn’t necessarily get rid of that right away. It needs either an internal or external, I don’t know, like, solution to help you get rid of that.
Sometimes I explain to people the anxiety and the hyperarousal can be like a diabetic with insulin. They need to take insulin to push down their (blood sugar) throughout the day. And so with a sensory diet you may need a weighted vest, you may need medication, you may need a quiet room — you need things to help your body get back to normal after a big sensation happens.
I really wish more people would learn more about that, because I know my self-care has improved too through learning a little bit about that. We could all use a little bit of a sensory diet.
Clohessy is managing editor of the Lewiston Tribune. He may be contacted at firstname.lastname@example.org or (208) 848-2251.
Title/occupation: Real estate agent and notary signing agent.
Family: 15-year-old son, Phil.
Education: Graduated from Lewis-Clark State College in 2004.
Work history: 12 years (2007-19) at Asotin County Sheriff’s Office as a corrections sergeant; currently developing real estate career.
Hobbies/interests: Painting, swimming, playing on the river with a kayak or sailboat.
Do you have any hidden talents, or is there anything else that might surprise people about you?: “I’ve been advocating for Fragile X since we received the diagnosis in 2010. I’ve really enjoyed building close friendships with other Fragile X families.
For more information about Fragile X syndrome
Facebook podcast: @TalkfragileX