All parents experience individual and collective challenges, but often the most demanding tests parents of children with disabilities and neurodivergent children face is feeling alone. Not being able to relate to other parents whose children are thriving by society’s standards or achieving “typical” milestones can be difficult to hear and take an emotional toll. Connecting with other parents whose children have disabilities, even if it’s not the same diagnosis as their child, gives parents support, encouragement, empathy, and resources that lift their spirits and build communities and friendships.
Just as there are different phases in parenting, so are the reasons to seek out support. For example, when a parent receives a diagnosis prenatally, they often feel scared and unsure of the challenges their child may face in life. Years later, a parent may need support in understanding and advocating for their child’s IEP (Individual Education Program). “My husband and I were very scared when we found out our daughter had Down syndrome prenatally. We went online to find support groups to meet other families with Down syndrome children. We found Magic Babies and what I love about this group is you feel supported and comfortable asking questions.” Kori Young shared.
FOUR SUGGESTIONS FOR FINDING SUPPORT
1. National Non-Profits & Organizations: Virtual support groups are becoming commonplace in the digital era of ZOOM. Talking with other parents whose children have the same diagnosis can be very enlightening and educational and give insight and support in ways you may not be able to find locally.
These websites often have a plethora of helpful information, from a directory of providers specializing in your child’s disability to online events, seminars, and resource directories. Through the Tourette Association of America, I can attend virtual conferences and webinars for free. The website also has educational resources, ranging from “Educating Classmates About Tourette Syndrome (TS)” to videos about doctor visits, Individual Education Programs (IEP), therapies, medication, and many more topics. An archive library of educational presentations includes medical professionals speaking about medicines and drugs, clinical research, and psychological support.
Many links include school handouts, classroom activities for children to understand the student’s diagnosis, letters to classmates’ parents, and educator training.
The amount of information can feel overwhelming, but national non-profits have customer support and volunteers that can provide specific support for your needs. This includes representatives who can attend IEP or teacher conferences and give training to the schools.
Many national non-profits have summer camps where children and families can learn, play and make lifelong friendships. In addition to having fun with camp activities, many include seminars for parents. These events and camps allow children to make friendships with others with the same diagnosis and find an inclusive community. Perrine Adams and her sons attend Camp George every summer, a family camp through the Tourette Association of America. All of the counselors have Tourette Syndrome, and many were once campers. The Adams family has made lifelong friendships and travels to visit other families throughout the year. It’s a unique support system for her son with Tourette’s and the entire family.
2. Facebook Groups: National and regional chapters have private groups where members can ask questions and coordinate community events (examples include picnics to gather and meet and events to raise awareness).
3. Local Chapters: In October, we featured Magic Babies Monterey County, a support group for families who the magic of Down syndrome has touched. Since its inception in 2012, approximately 100 families have joined, and the family-to-family support group was founded when two mothers came together and wanted to help others.
Parents of children with disabilities and neurodivergent children often seek out those connections or are happy to be someone those struggling can lean on and share experiences with. If you don’t know anyone, ask a school counselor, teacher, medical provider, therapist (such as OT or PT), or your child’s coach. Per HIPAA, they may not be able to give you information at that moment but can ask another parent for permission and introduce you two. I’ve met many mothers this way.
4. One-on-One Support: You’d be surprised how many parents you know have children with disabilities or concerns but don’t have people they feel can relate to. Even if the needs are different, the feelings are often similar. This is not only an opportunity to learn and share the resources you’ve used and the trials and errors you’ve experienced, but it’s an incredible bond when parents can relate to the unique struggles and challenges you face.
“You are not alone” is one of the most powerful phrases you can say to a parent of a child with a disability. Finding support groups or just talking with another parent over a cup of coffee, brings comfort and compassion, often when parents of children with disabilities and neurodivergent children need it the most.
Sabrina Hiltunen is a Monterey native who has learned about neurodiversity from researching and advocating for her son. She loves the Monterey Peninsula and wants to share what she’s experienced with other parents who are going through the challenges and struggles she has.