By Megan McQueen
When my nephew received a diagnosis of a rare genetic syndrome, our family was grief-stricken, scared, confused, and also relieved. Doctors tested for multiple issues, some of them grave. We knew this would lead to more questions, life-changing effort on his mother’s part, and constant anxiety. Our love for him was steady – we all quickly gained perspective and gratitude for healthy days.
A diagnosis of a disability in your child can flood you with many emotions including anger, denial, sadness, and grief. Parents may also feel relief. You may have felt that something was “off” and your child was struggling or you were failing as a parent, when in fact, there were underlying issues leading to your child’s overall needs. Cope with your emotions and understand that there is no shame in how you are feeling. Raising a child can be stressful and considering extra ability issues may be overwhelming at times. Find healthy ways to manage your stress: walk with friends, join a social group, trade baby-sitting with a neighbor. Work with your emotions so that you can reach full acceptance of your child and be willing to ask others for help.
Make a plan with your medical team to support your family. Here are suggestions to get you started.
Focus on what your child can do. This one goes for all parents! Focusing on the positive developments in our children will be uplifting for us and them. We see more of what we look for, so keep your eye out for growth and moments of joy. Connect with your child and express your unconditional love for them.
Seek out early intervention. Childrens’ needs vary widely based on their diagnosis and often within the disability. You know your child better than anyone else and can help figure out how your child fits in with their diagnosis. Ask your pediatrician about what services are available to help your child. Early intervention can make crucial differences for young children.
Write down your questions. Oftentimes, you will feel as though you have more questions than answers, especially when searching online for advice. Keep a notebook or a notes app on your phone to record all your thoughts and questions so that you can stay organized when you’re meeting with professionals. It also may help to have someone attend doctor’s appointments with you so they can record information and you can focus on the conversation and your emotions.
Find a support network. Reach out to a support network that “gets it.” Every parent can share stories about their children, but sometimes you need a group that understands just what you’re going through. Connect with other caregivers that have children with additional needs. Look for online groups specific to your child’s diagnosis and also seek out families in your community that can share insights to your local resources. Many school districts have a special education parent network.
Provide a variety of social opportunities. Nurture friendships with many different children. Look to your neighbors, schools, daycare, even friendly families you meet at the park. Diverse friend groups offer glimpses into other worlds and promote accepting, inclusive relationships for everyone. Give your child opportunities to problem solve and struggle a bit to build their resiliency and independence skills.
When I become overwhelmed with sadness about my nephew, I remember that strength comes from love. He and I are both stronger when we focus on the love we have for each other and our time together. You may not be able to change news from doctors, but you can always choose love, kindness, and tenderness.
- Just Ask! Be Different, Be Brave, Be You by Sonia Sotomayor
- We All Have Different Abilities by Melissa Higgins
- Wonder by R.J. Palacio
Books for Parents:
- Expecting Adam by Martha Beck
- Far From the Tree by Andrew Solomon
- The Spark: A Mother’s Story of Nurturing, Genius, and Autism by Kristine Barnett
- Common Conditions The CDC has compiled information about a variety of disabilities and disorders.
- Early Intervention Information about Early Intervention services, including contact info by state.
- Global Genes Resources for rare diseases and disorders.
- Search your child’s specific diagnosis for a research-based organization
For a downloadable tip sheet, please visit our other blog post.
Megan McQueen is a warmhearted teacher, coach, consultant, and writer. She grounds her work in empathetic education, importing a strong sense of community and social skills to those with which she works. Megan prioritizes emotional learning and problem solving skills. When not at work, she is most likely playing with her husband, two children, and puppy.