Jill Seaney is rounding out her series on the importance of community for parents of kids with complex medical needs, which she began last spring, with information about how to find the special needs community best able to support and encourage you.
3 Ways to Build a Community for Parents of Kids with Complex Medical Needs
One of the most important things I can recommend to parents starting out with a child with special needs is to build a strong support network or community. In Part 1 of The Importance of Community for Parents of Kids with Complex Medical Needs, I talked about how no one can understand and support you like another parent of a child with a similar diagnosis. But during this emotionally and physically difficult time, how do you find these people and build your own community?
There are many ways you can find other parents. We are so blessed to live in a time when we can connect with people all over the world with a few quick clicks. There are probably more ways to find your people other than what is in this post, but these examples are how I found my community.
Facebook is the quickest and easiest way to find other parents as there are groups for just about everything. Try a couple different searches in Facebook, read through the groups’ descriptions, and if it looks like the right fit, click on the “join” button. Typically there is one or two moderators who will approve your request. Some groups ask a couple questions first to make sure it makes sense for you to be added and that you aren’t a spammer. Most of these groups are private so only the people in the groups can read personal questions or information about a child and to build a mutual level of trust. I have found many new friends in Facebook groups and don’t know how I would have made it through the first year of my son’s life without these support groups.
I kept a very detailed blog about my pregnancy, my son’s birth story and diagnosis, his initial surgery and NICU stay, and subsequent surgeries and hospitalizations. The blog is public and searchable through Google key word searches. Several moms have reached out to me because they found my blog while searching topics related to their children. I have done keyword searches on different blogging sites and met some really amazing moms this way as well.
Although I met a lot of moms online, I still wished I knew someone locally. I searched online for local support groups and found a local special needs parents’ group. But none of the local moms had a child with the same medical complexities who was close in age to my child. I decided to ask my son’s surgeon and some of his specialists. I knew they wouldn’t give me other families’ names and contact information because of confidentiality. But they agreed to give my name and phone number out since I had given permission. My first text from a mom with a NICU baby arrived a year ago. We have become friends, share our ups and downs, and support each other. There is a special camaraderie we share with each other.
As I was preparing to be a new mom, I never imagined the challenges and struggles I have faced. It’s a world that I was shoved into without a manual about how to feel, react, or live day to day. In addition to my faith and my husband, the community of mom friends I have built since our son’s birth has gotten me through some difficult days. Our children unite us when one mom is struggling. We lift each other up and remind each other that its okay to be upset and to cry, but we also push each other to keep going. No matter how difficult this journey is, our community supports us. Therefore, I challenge parents of children with medical complexities or special needs to reach out to other parents and build their own community.
Jill lives in Tucson, AZ with her husband Jeff and their son Blake. She worked in Human Resources up until 2014 when her son was born with VACTERL Syndrome which included EA/TEF. Jill resigned to care for her son full time. Later he was also diagnosed with a Congenital Diaphragmatic Hernia and Eosinophilic Esophagitis. Jill’s personal blog (Beloved Blake) documents his surgeries and health challenges, their family struggles, and Blake’s milestones. Jill loves writing and teaching others about what it’s like raising a child with complex medical needs. She wants to be a blessing to other parents just starting on this journey.
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