Pat is funny and likes to laugh. He does not speak but is funny in his own way. As an example, if you ask, “How are you today?”, he could do thumbs down as he is smiling, knowing that he is teasing. He will play the same video that makes him laugh over and over.
What is your favorite thing about him?
His need for routine, which can be a curse and a blessing. He does all his tasks at his day program, but trying to work in another task (especially a new one) can be challenging. Daily, when he goes to his program, he follows the same routine to get ready for the day.
If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be?
There are so many levels of Fragile X: from very able to learn, cope, and make friends to very cognitively affected, high anxiety levels high, and socially awkward.
What is your advice for newly diagnosed families?
Socialization! That does not mean always integration (but great if the child can tolerate it) in regular education classrooms but in sports, clubs, Special Olympics, and other activities. Work in small groups in school and in other activities; it will open adult program possibilities in the future. Stay active in groups in your community; PTO/PTA (you get to know principals and teachers), special education parent groups (it is valuable for talking with other parents in your town), and get involved with the National Fragile X Foundation and its Chapters. It will give you a wealth of knowledge about Fragile X from other parents and you can meet professionals that are experts in Fragile X.
What do you want your community to know about Fragile X?
Your support of Patrick and our family is so appreciated! We know that one day Patrick will be in a community living his life, and we hope you will treat him and others like him with respect and kindness. Spread the word about Fragile X; we feel it is underdiagnosed and misunderstood.
What advice do you have for parents/caregivers who are considering participating in research studies and/or clinical trials?
Do your research! Ask questions beforehand: how long will this take; what will my loved one have to do; will there be medication changes; and, will we learn more about our family member? We need everyone who can to participate! I know our family is unique that Pat is non-verbal, so many of the research and clinical trials he is not able to participate, but I have participated in many studies as well as our daughter.
About Faces of Fragile X
We asked parents, caregivers, and others to answer a few questions about their loved ones with Fragile X. These are the Faces of Fragile X, and This is Fragile X. If you would like to learn more about Fragile X, start here.