Support Groups
Emotional Support for Families
For Health Professionals
Seattle Children’s sponsors and hosts a variety of support groups for families of children who have special health or developmental needs. Most of the groups are led by hospital staff, parent leaders or parent-staff partnerships. Some of the groups are facilitated by community organizations.
Arthrogryposis Family Networking
Every quarter, Children’s Rehab staff host a midday luncheon for families who have children with arthrogryposis. These luncheons coincide with the quarterly Arthrogryposis Clinic dates. They are a time to meet other families, share a meal together and learn from staff and one another. For more information, contact Karen Peterson, family support coordinator, at 206-987-2180.
Autism Living Life & You (ALLY)
ALLY offers parent-led support groups for parents/caregivers of children significantly affected by autism. Groups are arranged by age of child, and free child care is provided by trained staff. ALLY is a collaborative effort of Children’s, ASTAR Center and The Arc of King County. Groups meet on the last Thursday of each month from 6:30 to 8 p.m. at Children's. Registration is required. Call Anna or Katrina at 206-332-1646 for details.
Bladder Exstrophy Support Group
This group provides positive mutual support to the families of children with exstrophy and related urologic conditions. We host an annual family summer camp and semi-annual meetings with guest speakers. Meetings are often followed by a social event or field trip. These events provide opportunities for education, networking, support and resource sharing. For more information, contact Ginger Thomas, clinic nurse and exstrophy coordinator, or Sherrie Croshaw, parent coordinator.
Craniofacial Center Family Support
Children’s Craniofacial Center provides families with resources to help them learn more and connect with other families. Each September, our picnic provides a relaxed atmosphere to meet other families and have fun. We also offer a free summer camp, Camp Korey, for children ages 7 to 16 with facial differences. A semi-annual newsletter, Family Faces, serves as a sounding board for families and provides useful information.
For more information, contact Cassy Aspinall, social worker, at 206-987-3271 or Catherine Rogers, parent liaison, at 206-297-3099. Or visit www.craniofacial.seattlechildrens.org.
Diabetes Support Groups:
- Little Kids with Insulin Dependent Diabetes (L'Kidds)
L'Kidds is a support group for parents of infants, toddlers and preschoolers with Type 1 diabetes. We meet Saturday mornings from 10 a.m. to noon at Children’s Hospital every other month starting in January and provide child care during our meetings. We also host a fun family picnic each July. To learn more, or if you would like to join us, contact Zuraya Aziz at 425-985-9199.
- Parents of Kids Experiencing Diabetes
This is a support group for families of children of all ages with Type 1 diabetes. Our popular monthly e-mail newsletter contains information about upcoming gatherings, information from other families about life with diabetes and other diabetes-related events in Seattle and western Washington. To learn more, or if you would like to receive the newsletter, contact co-editors Jen Hilt and Kim Klaffky at POKED.WA@gmail.com. Questions? Call Jen at 206-525-2411. We look forward to hearing from you!
Eating Disorders Northwest (EDNW)
Eating Disorders Northwest sponsors a support group for people 17 years and older struggling with eating disorders and food and weight concerns. At each meeting, we have a facilitated discussion and an open sharing time. The group meets every Sunday from 7 to 8:30 p.m. For a current calendar, visit www.ednw.wetpaint.com.
EDNW is associated with a long-standing parent/family support group called Friends and Family Northwest that holds meetings every Monday, except holidays, from 7 to 8:30 p.m. near Children’s Hospital in the University District of Seattle. For more information, visit http://groups.msn.com/seattleFED or call 206-546-5639.
Epilepsy: Parent-Caregiver Support Group
Come learn a few things and meet people who know where you are coming from on the second Saturday of every other month. A brief (30-40 min) educational presentation will be followed by Q&A, discussion and plenty of opportunities for connecting with others. This group is sponsored by the Epilepsy Foundation Northwest. For more information call 206-422-6873, e-mail or visit their Web site.
Feeding Issues Support Group
This group offers support for parents of children faced with a variety of feeding issues, such as tube feeding, reflux, oral sensitivities and challenging meal times. Our meeting typically takes place on the second Saturday of each month from 2 to 4 p.m. Please contact Aletha Bowman, occupational therapist, at 206-987-3912 or Tiffany English, social worker, at 206-499-6919 to confirm. We also host an online support group.
Grief Support
- The Journey Program provides grief support for families whose child has died. Please see the Journey Program page for more information.
- Parent Support is a group of parents who provide support for anyone who has experienced the loss of a child through stillbirth, miscarriage or newborn death. We offer groups throughout the Puget Sound area, including one held at Children’s Hospital on the first Thursday of every month at 7:30 p.m. We also have a "Pregnancy after Loss" group that meets on the last Tuesday of every month at 7 p.m. Our groups are led by trained volunteers. Visit our Web site or call 206-782-0054 for current meeting locations, dates and times.
Heart-to-Heart Congenital Heart Defects Support Group
This parent-led support group welcomes families dealing with congenital heart defects (CHD), heart conditions from illness, heart transplant; who have learned their unborn baby may have a heart problem or who are grieving the loss of a child to a heart condition. This group is also a place for our kids and their siblings to meet others who have gone through similar times. We meet once a month at Children’s Hospital. Child care is offered during the meetings. If you would like to join us or you want to know more, please call Dr. Josephine Young, parent, at 425-827-4600 or e-mail heartmom1204@yahoo.com.
Hydrocephalus Support Group
We are a parent-led group hosted by the Children’s Hospital Neurosurgery Department that provides support, education, and current research and advocacy information about living with hydrocephalus. We hold four to six meetings per year (child care is provided) and a family picnic in the summer. We also offer online and phone support. We welcome all parents and children affected by hydrocephalus, regardless of where a child is treated. Visit our Web site for more information or contact Leslie Kempthorne or call 425-482-0479, option 3.
Parent Support Program (PSP)
The Parent Support Program offers families of children with special health needs a way to connect with an experienced volunteer parent who has been through a similar situation with their own child. Parent "matches" are made with the intention of providing emotional, practical and informational support. Conversations between parents typically take place over the phone. For more information, contact Lawrie Williams, PSP coordinator and parent, at 206-987-1119 or visit the Center for Children with Special Needs site.
Pediatric Brain and Spinal Cord Tumor Support Group
Whether your child has just been diagnosed or has been off treatment for years, this group is a place to talk with other parents about issues specific to brain and spinal cord tumors and the aftereffects of their treatment. We are a fairly informal group. Our meetings are an open forum for parents to talk and offer support to one another. Occasionally, we have guest speakers talk about issues important to our community. We generally meet at the hospital on the third Thursday of each month from 6:30 to 8 p.m. Child care is available. For more information and to confirm meeting dates, contact Jennifer Trudeau at 206-335-9562.
Sibshops
Sibshops provide peer support and education for brothers and sisters of children with special health or developmental needs. These are lively events that include fun activities, games, special guests, discussion and information sharing. Sibshops sessions for different age groups are typically offered every other month throughout the school year on Saturdays. For more information or to register, visit the Sibshops Web page or contact Cathy Harrison, child life specialist, at 206-987-3285.
Northwest Infant Survival Alliance/SIDS Foundation of Washington
The Northwest Infant Survival Alliance/SIDS Foundation of Washington provides emotional and informational support to bereaved families. For referrals in the Seattle area, call 206-548-9290. For Eastern Washington, call 509-456-0505. More information is available at our Web site.
Transgender & Gender Variant Support Group
Does your child prefer to wear the clothes of the "opposite" gender or insist that he is really a girl or that she is really a boy? Do you struggle with how best to support your child while helping them stay safe? Is your child transgender or is this just a phase? You are not alone. Come join our support and information group, and share your experiences with other parents and family members. The group meets monthly on the third Sunday from 5:00 to 7:00 pm. For more information contact Aidan Key at 1-877-809-4159 and visit www.genderspectrumfamily.org
Velocardiofacial Syndrome (VCFS)/Digeorge Syndrome Support Network
Our group provides parents with information about VCFS and contact with other parents. Through these connections, parents may find they share similar life experiences and challenges with their children due to this syndrome. From time to time, we host informal get-togethers. For more information, contact Polly Parson, parent, at 206-523-0142.