The Families of David’s Refuge
It isn’t possible to talk about self-care for family caregivers without talking about respite. More than any other service, respite or a break is what family caregivers want most. — Suzanne Mintz, National Family Caregivers Association president and cofounder
In honor of National Family Caregivers Month, we talked with two families involved with David’s Refuge, a local nonprofit organization that provides care for the caregiver. They shared stories with us about their children, how David’s Refuge helped them and how they’re paying it forward.
SWM: Tell us a bit about your family.
Judie: We are an athletic, active, busy family. When we’re not going to a sporting event of our own, we watch as many SUNY Cortland football or basketball games as we can. We have a large extended family, both locally and all around the country, that we spend a great deal of time with.
SWM: How does raising a child with special needs impact your family?
Judie: More than just the impact on any given day, it’s impacted the way we think, act and treat others. I’ve always been kind, patient and understanding of individuals who were a little different, but living in Thomas’s world for the past 10 years has increased those characteristics exponentially.
In addition, my husband and I make a concerted effort to tend to our daughters’ needs as much as possible. Both of our girls have become incredible advocates, not only for their brother but for so many other students and individuals with special needs.
SWM: When and how did you connect with David’s Refuge?
Judie: We heard about David’s Refuge when Thomas about 3 or 4 years old and still a patient of Dr. Dosa at Upstate Medical. We sat on the idea and application because it seemed to good to be true. We couldn’t comprehend that someone/some organization/some people would simply want to care for us.
When we finally did apply and set up our first weekend, I only told Tom we were going away for the weekend together as a surprise. What we learned that weekend — and every other time since — is there are people who genuinely care about others and simply want
to help us help ourselves be better parents, caregivers, etc.
SWM: Last year, you became a host couple for David’s Refuge, donating a few weekends per year to help other couples on their journey with the organization. What prompted you to make that decision?
Judie: We were asked. To be honest, I didn’t think our schedule or finances would allow it. But the funny thing about giving back is it truly benefits the giver as much as the receiver. We love our weekends as hosts almost as much as our weekends as a couple.
We weren’t in a position to give financially, so this is a way for us to pay it forward. The connection we make with other families is really something you just can’t describe — you have to feel it.
SWM: In recognition of National Family Caregiver Month, do you have any advice for other caregivers?
Judie: Take care of yourself. It’s OK to get a massage or pedicure, read a silly novel instead of another article about your child’s condition or be tired, burned out and angry at the disability. Find someone for each of your needs. Create a community around yourself. Being a special needs parent can be very isolating, even when you’re surrounded by other people.
SWM: Anything else you’d like to add about National Family Caregiver Month or David’s Refuge?
Judie: If you’re on the fence about going on a weekend… just do it! You’ll be glad you did. Take the risk and take care of yourself. I am a caregiver for my 83-year-old mother with Alzheimer’s and my 10-year-old son with special needs. I often have feelings of guilt and of not being good enough. But then I remember: I AM enough and I’m doing the best I can. Thank you David’s Refuge for always reminding me of that!
SWM: Tell us a bit about your family.
Julie: I am a single mom of one courageous and infectiously joyful girl. My daughter does not walk or talk, but that doesn’t stop her from fully expressing herself and getting into all kinds of mischief! She is a social butterfly and full of compassion and concern about the people in her world. We’ve recently moved Grandma into our home. My daughter is enjoying this new texture in our lives.
SWM: How did raising a child with special needs impact you?
Julie: Raising my special needs child has given me opportunities to grow in ways I could have never imagined. It brought out my inner tiger, for sure! I’ve learned to use my voice, advocate and even fight for what’s necessary and right.
The biggest lesson I’ve learned from my child is no matter what’s happening, you can figure out how to be happy. Born with severe orthopedic deformities, she doesn’t walk, but she climbs stairs, she swims, she plays in the snow. She does what other kids do. It doesn’t matter that she does things her own way and it isn’t always pretty. She does what she wants, and she enjoys her life!
I’ve struggled in my life with a fair amount of anxiety and a feeling that I don’t quite fit the mold of the world, but she has taught me that’s OK. Just be happy and live your life.
SWM: How did you connect with David’s Refuge?
Julie: I connected with David’s Refuge through my child’s preschool program during the first year they were in operation. My first respite weekend was in Warren and Brenda Phol’s home. I have had the pleasure of several respite weekends and other David’s Refuge events. SWM: How has the organization impacted you? Julie: My involvement with my David’s Refuge friends is hard to describe. Everyone desires to connect with others who relate to them and their unique life experiences. While I’m blessed with an abundance of wonderful, supportive people in my life, nowhere else do I feel so at home than with my David’s Refuge community. These are my people!
SWM: Talk about the newly-created single mom weekends you helped David’s Refuge create.
Julie: Attending respite weekend as a single parent was never less than amazing, but there were some awkward moments for both myself and the couples attending. While I’m comfortable enjoying outings without a partner accompanying me, certainly some things are better enjoyed with others. David’s Refuge would provide me with the same generosity given to couples and I was left unable to really utilize it all.
Also, there remained a big piece of the puzzle we couldn’t share: the difference between raising a special needs child as a couple and doing that as a single parent. The creation of a single parent weekend provided an even greater depth of understanding and common ground.
SWM: In recognition of National Family Caregiver Month, do you have any advice for other single mothers?
Julie: All special needs parents need support and help. Single parents have no one to pass the baton to on a regular basis. That can be overwhelming at times. Asking for help is necessary. It’s not weakness or lack of ability. No one can pour from an empty vessel. Even though it can be uncomfortable to ask for help, my advice for other single or coupled parents of special needs children is to do it anyway. Fill your tank. Don’t let the business of the day — the caregiving, the appointments, the therapies, etc. — let you lose yourself. SWM
For more information on David’s Refuge, visit davidsrefuge.org.
Interviews were edited for length and clarity.