Just like anything on the internet, it can be hard to find valid information on the internet. It’s important to use credible sources.
Your area might have a local Caregiver Chat or Meet-up Group on Facebook or even a local group for parents or caregivers of children with special needs. You can post questions and potentially someone local can help point you in the right direction. You may be able to find more connections and active groups with the same medical condition.
- Feeding Tube Awareness Facebook Page is the largest online support group for tube feeding in the world. Thousands of parents and caregivers are available to offer support, resources, knowledge, and experience.
Classes and Groups
Connect with your local Family and Community Support Services Association of Alberta (FCSS), Family Support for Children with Disabilities (FSCD), inclusion and accessibility organizations, City or Town municipal websites for support groups and programs. You can also check local recreation and aquatic centres for classes that may be of interest. Local volunteer associations and charitable organizations are also a great way to do something good and connect with others for support.
Families often find that it can help to talk to with someone who's had similar experiences. Here are some ideas and links for how to connect with a peer. These services are free of charge and the links provided also provide information on how you can become a volunteer to support other families if you're interested:
- AHS Family to Family Connections | Provincial (administered through Alberta Children's Hospital)
Family Peer Mentors are available throughout Alberta who have experience with Eating, Feeding and Swallowing. They are ready to listen, share their experiences, and direct you to appropriate information and resources. Typically, families and volunteers will connect through one to four phone calls over a few months, but this can vary. Some families choose to meet in person or to use email.
Phone: 1-877-943- 3272 ext.3
- AHS Family to Family Connections | Alberta Children's Hospital
Through the Alberta Children's Hospital, you can connect one on one with a family member who has significant experience with their child's or their own health need or disability. They are ready to listen, share their experiences, and direct you to appropriate information and resources. Typically, families and volunteers will connect through one to four phone calls over a few months, but this can vary. Some families choose to meet in person or to use email.
Phone: 1-877-943- 3272 ext.3
- AHS Patient & Family Centered Care | Stollery Children's Hospital
Feeding Matters’ Power of Two program | International
This is an international system of support for families of children with a pediatric feeding disorder who eat by mouth and/or by tube.
Ways to find another parent or caregiver in your community
It’s likely that your healthcare provider may know of similar parents or caregivers of children that have similar medical diagnoses and encounter similar experiences. They cannot give out their contact information directly, but rather they can ask them for consent to connect you. Remember they are not a medical provider, but could give you some ideas on what has worked and what has not worked for them that is sometimes out of the regular scope of a healthcare provider. Do your research and ask your provider and medical team members first before making any medical changes. Remember that no two children or families are the same and what are appropriate recommendations for one child may not be appropriate for another child despite apparent similarities.