November 2022
Dear Friends & Family,
Another year has passed presenting us, and Lucas, with new challenges. People with Fragile X syndrome have an incredibly hard time with any sort of disruption to their daily schedule. Yes, we all do, but for these folks it feels more like an anguishing life event than a simple change in routine. They prefer to remain in “their world”, which for Lucas is his bedroom with his iPad and DVD player.
Lucas attends an adult day program that has been gradually recovering from the Pandemic. This means baby-steps for this vulnerable community. Even a slight change to add more days to his program results in Lucas stomping his feet, grinding his teeth, yelling, and lots of crying. This can go on for days or even weeks. On the plus side, he would never hurt anyone else and is gentle as a lamb to those around him.
Although Lucas can communicate his basic needs and wants, he doesn’t use expressive language or explain situations that hurt or upset him. One recent example occurred in September when we suddenly noticed that he had a bad limp. We initially thought it was a recurring knee injury, but when we asked Lucas “where’s boo-boo” he pointed to his foot. We have to assume he injured it from an aggressive foot stomp, but we really have no idea what happened, and we never will. Taking Lucas to the doctor (or dentist) is always an extremely traumatic experience for him (and us). Getting X-Rays is near impossible. We succeeded this time and were lucky that it wasn’t anything major.
Even though most of the time Lucas seems to be in his own world, he occasionally listens in on conversations, so we need to be very careful about what we say around him. When his mom casually mentioned that one of his eyebrows had a gray hair and that she needed to trim it, he immediately took it upon himself! This was the result...
Lucas has also been spending some time in the gym this year. We had to entice him to go by offering McDonalds Breakfast Burritos as a reward. We know what you’re thinking, but we are working on phasing that out. Just see how proud he is in this video that we took right after one of his workouts.
This all may seem somewhat insignificant and that life is easy for Lucas. It’s not. And it’s not easy living with him. Anyone that spends any time with us knows how incredibly stressful and confusing Fragile X Syndrome is. Please help cure this disease for Lucas and others like him by sending a donation to FRAXA. Thank you for time, consideration, and love.
Sincerely,
