Support Groups for Parents and Families
Overview
Children's Hospital sponsors and hosts a variety of support groups / networks for families of children with special 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.
The Children's Resource Line at (206) 987-2500 can provide information about additional support groups in the Puget Sound area.
Arthrogryposis Family Networking
Karen Peterson (206) 987-2180
Autism Living Life & You
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 CHRMC, ASTAR Center, and The Arc of King County. Last Thursday of each month 6:30-8:00 p.m. at CHRMC. Registration is required. Call Anna or Katrina at 206 332-1646 for details.
Bladder Exstrophy Support Network
Ginger Thomas, RN (206) 987-1158
Bone Marrow Transplants and Stem Cell Transplants
Parent gatherings for support and sharing. Tanya Ranchigoda, MSW (206) 987-2531
Children's Hydrocephalus Support Group
A parent group that provides support, education, current research and advocacy information through local support group meetings plus online support regardless of geographic location. Visit the Web site. Lori Poliski, parent (425) 482-0479 or e-mail.
Craniofacial Support Network (Family Faces)
Cassy Aspinall, MSW (206) 987-3271
Diabetes Support Groups:
- L'Kidds
Support group for parents of infants, toddlers and preschoolers with diabetes. Zuraya Aziz, parent (425) 985-9199 - Super Kids with Insulin Dependent Diabetes (SKWIDDS)
Support group for families of children with Type 1 Diabetes of all ages; typically beginning school age-teens. Kathy Bolopue, parent (425) 643-0592
Eating Disorders Support Group
(206) 517-3643
This support group is sponsored by a community group called Eating Disorders Northwest. Please visit the EDNW Web site for more information. The support group is not part of the Children’s Hospital Department of Psychiatry’s Eating Disorders Program.
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) 547-4551, e-mail or visit their Web site.
Feeding Issues Support Group
Tiffany English, MSW (206) 499-6919.
For parents of children faced with a variety of feeding issues such as tube feeding, reflux, oral sensitivities and challenging meal times.
Grief Support Group (Journey)
Jackie Kite, MSW, LICSW or Leslie Wright, MA (206) 987-2062
Heart-to-Heart Congenital Heart Defects Support Group
This parent-led support group is for Puget Sound families of children affected by heart issues. We welcome families dealing with congenital heart defects (CHD), heart conditions from illness, heart transplant, or who are grieving the loss of a child to a heart condition.
We are here for parents who have been told that their unborn baby may have a heart problem. This group is also a place for our heart kids and their siblings to meet others who have gone through similar times.
We meet once a month at Children's Hospital in Seattle. Childcare is offered during the meetings. If you would like to join us or you want to know more, please call Josephine Young, MD at (425) 827-4600 or e-mail heartmom1204@yahoo.com.
Liver Transplant Support Group
Amal Muammar-Hastings, LICSW (206) 987-2696
Parent Support Program
Lawrie Williams, parent (206) 987-1119.
The Parent Support Program connects families who are in the beginning stages of learning about their child's special health care needs with trained volunteer parents who have been through a similar experience with their own child.
The one-to-one peer support takes place primarily over the phone.
PS My Baby Died Support Group
(206) 782-0054
Sibshops
Cathy Harrison, CCLS (206) 987-3285.
Sibshops provide peer support and education for siblings of children with special health and developmental needs. These lively events range from information gathering and discussions to fun activities, games and special guests.
SIDS Support Groups in Washington State
(800) 533-0376. View our SIDS web page.
Support Group for Parents-Caregivers of Children with Epilepsy
Epilepsy Foundation Northwest offers this educational presentation and networking opportunity. Come learn a few things, ask questions and meet people who take care of children with epilepsy. The group meets on the second Saturday of January, March, May, July and September, from 10 a.m. to noon. To subscribe to the Parent-Caregiver Support Group e-mail list and receive more information, please contact Mineko Sterling at Epilepsy Foundation Northwest.
Velocardiofacial Syndrome (VCFS) / DiGeorge Syndrome Support Network
Polly Parson, (206) 523-0142
Other Phone Numbers
Washington State Parent to Parent Support Program: (800) 821-5927