It’s the start of the school year for moms and kids everywhere. Moms are back to focusing on helping their child have a positive school experience. For moms of a child with special needs, this is an especially stressful time of year—ensuring the team is in place to support your child with IEP’s, special education, transportation, school nurses, teachers etc.
After you’ve worn yourself out to get the school system in place, there will likely come a day when your child comes home in tears because they couldn’t run fast enough to keep up with the other kids at recess or someone called them “weirdo”. You’ve done everything humanly possible to help your child and still it’s not enough—because you can’t make the disability go away and you can’t control what others say or do. So, what do you do when your child is looking at you with tears rolling down their cheeks?
Speaking from the perspective of an adult who was once a child with a disability, Spina Bifida, I wanted my mom to hold me in her arms, listen to my stories and let me share all my feelings of sad, mad, scared and hurt. I wanted my mom to be with me so I wouldn’t be all alone. Like any kid, I wished my mom could just kiss it and make it better e.g. make the Spina Bifida go away. Other than keeping me home with her forever, my mom wasn’t able to keep me from being hurt sometimes. What she could give me was a safe place where all of me was accepted and loved—in her arms where all my big, messy feelings are welcome.
To moms (and dads), holding your child when they’re crying may seem simple enough to do, yet in reality, there is nothing more challenging than holding your child while your heart breaks for their pain, you’re furious at the world for hurting your child, and feeling helpless to make it better. This is especially true when you’re exhausted from working so hard, every single day, to make your child’s life the best it can be and you’re feeling sad, mad, scared and frustrated yourself.
My invitation for parents is to be real with your child and let them know that you share their pain. Acknowledge and validate your child’s feelings, let your child know that it does stink and you hate it too. You both share the experience of disability—each from your own perspective—why not share feelings too? You don’t need to be stoic and heroic pillars of strength for your child.
When a parent validates their child’s experience, this lets your child know “It’s OK to be as you are. I am here.” By doing so, you give your child permission to be more fully themselves, allowing their emotions to flow through them more freely without pushing them away. This builds emotional capacity in your child and develops their resiliency at handling the frustrations and challenges of life, including living with a disability.
In both my personal and professional experience, I have learned that the ability to be emotionally present with another, especially a precious loved one, requires that you are first able to be present with your own feelings. And feelings related to disability are typically very big feelings. I encourage parents to get support for themselves—where all of you is accepted and loved. A safe person who will listen to your stories and welcome all your big, messy feelings. This builds your emotional capacity and develops your resiliency to be with your child — whatever they are experiencing or feeling.
If you’d like to read more about sharing the grief and feelings with your child, one of my favorite articles on this topic is “When Facing Disabilities, it’s OK to explore the grief” by Barbara Meltz, which ran in the Boston Globe on April 7, 2005.