Matthew and Deborah Weber
How long have you been connected with David’s Refuge?
We first heard about David’s Refuge in 2023 and went on our first Respite Weekend in 2024.
Please explain any diagnosis your child has, and you have experience with
Our son, Scott, has Tourette Syndrome, ADHD, Generalized Anxiety Disorder and Oppositional Defiance Disorder.
What is your favorite part of being a host?
We are looking forward to helping caregivers wind down and take a break from the stress and worry that is literally 24/7. Whether that means sleeping or discussing strategies, we will offer support and a listening ear.
What is something you want your guests to know about you?
We have three sons: (as of Jan 2025) Brian, 28, Andrew, 26 (wife Carrie and baby Teddy due Feb 2025), and Scott 21. Matthew and I both ride motorcycles and want to ride in every state in the US. Matthew is a Construction Project Manager for NYS as well as a volunteer firefighter in Fairport. Deborah is a School Bus Driver for Fairport CSD and drives special needs children.
What is a piece of advice you have found invaluable as a family with experience in special needs or a medically fragile diagnosis?
We are in such a good place with our son right now and have gone through the red tape and bureaucracy of our educational system that has taught us the value of involved parents fighting for your child. We all need guidance and support and if you’re fortunate, you meet people along the way who will become invaluable. Always put yourself out there because you never know if you’re going to meet someone who will change the course of your child’s future.
Which partner location is your favorite and why?
We attended the River Spring Lodge Respite Weekend and absolutely loved the serene atmosphere, attention to detail and delicious menu. We are looking forward to hosting in many different locations, which I’m sure will have their own unique qualities.
A genie grants you the ability to have an infinite amount of one item. What is it?
Deborah – Word games! As long as I can keep my mind occupied, I’m good!
Matthew – Money! I could support so many charities that help veterans, first responders and the underprivileged.
What book changed your life?
Every book that we sat and read to our kids made our family closer and we’re looking forward to doing the same with our first grandbaby.
What is a question you wish people would ask you less?
We don’t really mind any question but people often ask if Scott swears (coprolalia) with his Tourette. Even though only about 10% of people with Tourette swear uncontrollably, Scott did have some coprolalia. Fortunately, he has better control now.
Are there any additional Questions and Answers you would like included?
We are an open book! So please ask anything that might help or give us ideas to make your weekend exactly what you need.