It isn\u2019t 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. \u2014 Suzanne Mintz, National Family Caregivers Association president and cofounder<\/p>\n
In honor of National Family Caregivers Month, we talked with two families involved with David\u2019s Refuge, a local nonprofit organization that provides care for the caregiver. They shared stories with us about their children, how David\u2019s Refuge helped them and how they\u2019re paying it forward.<\/p>\n
Judie: We are an athletic, active, busy family. When we\u2019re 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.<\/p>\n
Judie: More than just the impact on any given day, it\u2019s impacted the way we think, act and treat others. I\u2019ve always been kind, patient and understanding of individuals who were a little different, but living in Thomas\u2019s world for the past 10 years has increased those characteristics exponentially.<\/p>\n
In addition, my husband and I make a concerted effort to tend to our daughters\u2019 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.<\/p>\n
Judie: We heard about David\u2019s 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\u2019t comprehend that someone\/some organization\/some people would simply want to care for us.<\/p>\n
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 \u2014 and every other time since \u2014 is there are people who genuinely care about others and simply want
\nto help us help ourselves be better parents, caregivers, etc.<\/p>\n
Judie: We were asked. To be honest, I didn\u2019t 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.<\/p>\n
We weren\u2019t 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\u2019t describe \u2014 you have to feel it.<\/p>\n
Judie: Take care of yourself. It\u2019s OK to get a massage or pedicure, read a silly novel instead of another article about your child\u2019s 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\u2019re surrounded by other people.<\/p>\n
Judie: If you\u2019re on the fence about going on a weekend\u2026 just do it! You\u2019ll be glad you did. Take the risk and take care of yourself. I am a caregiver for my 83-year-old mother with Alzheimer\u2019s 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\u2019m doing the best I can. Thank you David\u2019s Refuge for always reminding me of that!<\/p>\n
Julie: I am a single mom of one courageous and infectiously joyful girl. My daughter does not walk or talk, but that doesn\u2019t 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\u2019ve recently moved\u00a0Grandma into our home. My daughter is enjoying this new texture in our lives.<\/p>\n
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\u2019ve learned to use my voice, advocate and even fight for what\u2019s necessary and right.<\/p>\n
The biggest lesson I\u2019ve learned from my child is no matter what\u2019s happening, you can figure out how to be happy. Born with severe orthopedic deformities, she doesn\u2019t walk, but she climbs stairs, she swims, she plays in the snow. She does what other kids do. It doesn\u2019t matter that she does things her own way and it isn\u2019t always pretty. She does what she wants, and she enjoys her life!<\/p>\n
I\u2019ve struggled in my life with a fair amount of anxiety and a feeling that I don\u2019t quite fit the mold of the world, but she has taught me that\u2019s OK. Just be happy and live your life.<\/p>\n
Julie: I connected with David\u2019s Refuge through my child\u2019s preschool program during the first year they were in operation. My first respite weekend was in Warren and Brenda Phol\u2019s home. I have had the pleasure of several respite weekends and other David\u2019s Refuge events. SWM: How has the organization impacted you? Julie: My involvement with my David\u2019s Refuge friends is hard to describe. Everyone desires to connect with others who relate to them and their unique life experiences. While I\u2019m blessed with an abundance of wonderful, supportive people in my life, nowhere else do I feel so at home than with my David\u2019s Refuge community. These are my people!<\/p>\n
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\u2019m comfortable enjoying outings without a partner accompanying me, certainly some things are better enjoyed with others. David\u2019s Refuge would provide me with the same generosity given to couples and I was left unable to really utilize it all.<\/p>\n
Also, there remained a big piece of the puzzle we couldn\u2019t 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.<\/p>\n
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\u2019s 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\u2019t let the business of the day \u2014 the caregiving, the appointments, the therapies, etc. \u2014 let you lose yourself. SWM <\/em><\/p>\n For more information on David\u2019s Refuge, visit davidsrefuge.org. <\/em><\/p>\n Interviews were edited for length and clarity.\u00a0<\/em><\/p>\n","protected":false},"excerpt":{"rendered":" The Families of David\u2019s Refuge It isn\u2019t 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. \u2014 Suzanne Mintz, National Family Caregivers Association president and cofounder In honor of National Family Caregivers Month, we talked with two…<\/p>\n","protected":false},"author":3,"featured_media":2117,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[99],"tags":[],"class_list":["post-2116","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured"],"gutentor_comment":0,"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/11\/Murphy-family-1.jpg?fit=800%2C573&ssl=1","jetpack_sharing_enabled":true,"jetpack-related-posts":[{"id":2373,"url":"https:\/\/www.syracusewomanmag.com\/?p=2373","url_meta":{"origin":2116,"position":0},"title":"SPECIAL FEATURE: One-of-a-kind David\u2019s Refuge gives parent caretakers a break","author":"Staff","date":"May 4, 2019","format":false,"excerpt":"By Christine Dunne Photo by Michael Di Giglio David\u2019s Refuge is a one-of-a kind organization, focused on giving parent caretakers a break \u2014 typically through a weekend getaway at a local bed and breakfast. \u00a0 \u201cParents are calling us from Texas saying, \u2018When is David\u2019s Refuge going to be in\u2026","rel":"","context":"In "Features"","block_context":{"text":"Features","link":"https:\/\/www.syracusewomanmag.com\/?cat=101"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2019\/04\/mdg20190325-55.jpg?fit=1200%2C960&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2019\/04\/mdg20190325-55.jpg?fit=1200%2C960&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2019\/04\/mdg20190325-55.jpg?fit=1200%2C960&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2019\/04\/mdg20190325-55.jpg?fit=1200%2C960&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2019\/04\/mdg20190325-55.jpg?fit=1200%2C960&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":1152,"url":"https:\/\/www.syracusewomanmag.com\/?p=1152","url_meta":{"origin":2116,"position":1},"title":"Brenda McCutcheon","author":"Staff","date":"October 27, 2017","format":false,"excerpt":"Caring for the Caregiver By\u00a0Brenda McCutcheon | Photography by Mary Grace Johnson Whether choosing caregiving as a profession, planning to be a caregiver for a family member or becoming a family caregiver unexpectedly, women in caregiver roles often find themselves suffering from denial, anger, social withdrawal, anxiety, depression, exhaustion, guilt\u2026","rel":"","context":"In "Featured"","block_context":{"text":"Featured","link":"https:\/\/www.syracusewomanmag.com\/?cat=99"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/10\/SWMBrenda-2.jpg?fit=1024%2C684&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/10\/SWMBrenda-2.jpg?fit=1024%2C684&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/10\/SWMBrenda-2.jpg?fit=1024%2C684&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/10\/SWMBrenda-2.jpg?fit=1024%2C684&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":1981,"url":"https:\/\/www.syracusewomanmag.com\/?p=1981","url_meta":{"origin":2116,"position":2},"title":"A Taste of David’s Refuge","author":"Staff","date":"August 2, 2018","format":false,"excerpt":"A Taste of Goodness Interview by Rachel Foster\u00a0 David\u2019s Refuge is a nonprofit organization serving parents and guardians of children with special needs. The fifth annual A Taste of David\u2019s Refuge fundraising event is planned for September 21. This event gives guests a \u201ctaste\u201d of the services David\u2019s Refuge offers\u2026","rel":"","context":"In "Features"","block_context":{"text":"Features","link":"https:\/\/www.syracusewomanmag.com\/?cat=101"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Food-Station-1.jpg?fit=1200%2C800&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Food-Station-1.jpg?fit=1200%2C800&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Food-Station-1.jpg?fit=1200%2C800&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Food-Station-1.jpg?fit=1200%2C800&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Food-Station-1.jpg?fit=1200%2C800&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":2469,"url":"https:\/\/www.syracusewomanmag.com\/?p=2469","url_meta":{"origin":2116,"position":3},"title":"INSPIRE: Maggie Bristol, Military Caregiver and Dole Caregivers\u2019 Fellow","author":"Staff","date":"July 4, 2019","format":false,"excerpt":"By Carol Radin Photo by Maureen Tricase\/Capture Your Moments Photography \u00a0 Looking back on the night that she met her husband, Maggie Bristol beams. \u201cHe was like my knight in shining armor,\u201d she said. \u201cA southern gentleman \u2014 kind, friendly, outgoing.\u201d Jeremy was stationed at Fort Bragg, North Carolina. 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