As a parent of a child with selective mutism, I know firsthand that it can be an isolating experience. By the time my daughter received her diagnosis at age 4, we were ready to find answers! She had just completed her second year of preschool and was still not talking to her teachers. By then, I had several years of worry under my belt and the diagnosis came as a bit of relief. But instead of it leading to an immediate plan of action, everyone still appeared confused. My daughter’s school did not know much about selective mutism and we were referred to a therapist who did not have experience treating selective mutism. Also, I didn’t know anyone who had a family member with selective mutism and at the time, there wasn’t much information available online. I was lost. Eventually, we found an excellent therapist and community to help support our family, but it wasn’t easy. Here is a simple roadmap I wish had been handed to me!

Connect with experts

It goes without saying that the first and most pressing step is to find a treating professional who understands selective mutism and knows how to treat it. Once you have a better understanding of this disorder and a solid plan in place, you can feel confident that you are doing what you need to do to help your child. Not sure where to turn for help? Visit the “Find a Treating Professional” page on the Selective Mutism Association (SMA) website to see if there is someone available in your area. Join the “Selective Mutism Association” Facebook page and the “Parents of Children with Selective Mutism” Facebook page to connect with our community for ideas. Additionally, check the “Conference & Events” page on the SMA website for camps and workshops across the country.

Build a tribe of SM parents

For me, this was an absolute game changer because, in the years before the diagnosis, I felt so alone. We didn’t know why our child wouldn’t speak to adults and why she wasn’t “growing out of it” as everyone assured us. I wondered if I was doing something to cause my child to be so reticent. I cringed every time an oblivious parent posted a group shot that showed my child with a solemn expression in a corner at a birthday party. Let me tell you…SM parents get it! With these new friends, you can share your goals, celebrate your triumphs and cry over your struggles. There is no need to worry that your child is being judged or your parenting is being questioned. Again, the parents’ Facebook page is a fantastic place to meet parents in your area. Additionally, check the SMA website to find a support group near you.

Find meaning in the struggle

Finding a way to help other families manage a selective mutism diagnosis has helped me immensely. Find something that has meaning for you! Learn as much as you can about selective mutism and make it your mission to spread the word. Offer to meet struggling parents for coffee or help host a local support group. Perhaps you can start a support group for parents at your child’s school that encompasses ALL special needs; including learning disabilities, emotional struggles and behavioral issues. It doesn’t have to be confined to SM.

Take care of yourself

The stress of watching my child struggle on a daily basis takes a toll. Don’t get me wrong. It is gratifying to watch my child stretch and show her grit! But I know it can be tough for her…which makes it tough for me. Find a therapist or a good friend who will listen. Lean on your spouse, parents or friends when you need support or a break. Don’t forget to spend time doing things you enjoy. If your body and mind are not healthy, it will be impossible for you to take care of your precious child with SM!

Kristin Carey Leos
Board Member, Director of Membership and Special Initiatives