You just found out that your child has selective mutism (SM). What do you do now? It is so relieving, yet overwhelming to finally get a diagnosis. Now you have something tangible to work with. But, the looming question is, “Where should we begin?” I’m here to help you get started!
There is a lot of information out there and it can be difficult to sort through it all. Your searching may leave you with your brain spinning and you’ll wonder how to apply what you have learned to your unique child. Here I will provide you with 6 simple steps to get you started. These are things that I did, or wish I had done, as I began this journey with Buttercup and Petunia.
Learn About Selective Mutism
You probably already have a good grasp of what selective mutism is – or at least how it is affecting your child. There is a lot to learn, so, I suggest you begin your research by focusing on the most effective current treatments (read more here). You want to look for therapies or treatments that have been studied and have evidence to back their success. Here are some good sites to get you started.
Each child is unique so as you learn, apply what fits in your situation. You know your child best.
Share the Diagnosis
Decide what and how much to tell family and friends, teachers, and others who interact with your child. Those who have regular contact with your child should learn as much as possible about selective mutism and be actively involved in whatever treatments you are currently pursuing. A consistent approach among caregivers is so important. Here is a sample tip sheet you can give to others. We have used a similar one tailored to Buttercup’s and Petunia’s needs.
We have found that most people we have shared the diagnosis with are so supportive and want to learn how they can help. However, we have also encountered harsh comments and realized that some people will still believe that the child is just being defiant or will eventually outgrow it if left alone. We don’t share the diagnosis with everybody. I don’t feel that it is necessary to explain to every parent and child at the park why my children won’t speak to them. I usually don’t explain to waiters or store clerks or others who will not have a lasting relationship with my girls. I am always cautious about labeling my kids so I save the detailed information for those who need to know and I give a more generic explanation to the rest of the world. For example, we give their teachers lots of information and training before they even meet Buttercup and Petunia. But, if we are at the park and a child asks me why Petunia isn’t talking I simply say, “She must still be thinking about what she is going to say. She will talk when she is ready.”
Choose a Focus
Your child probably has trouble speaking in multiple situations. It is helpful to make a talking map to sort it all out. You can do this by making a grid with names of people your child has contact with along the side and names of locations your child goes on along the top. Then you can mark who your child talks to and where. You might also specify if there is any non-verbal communication, noises, whispering, or using a normal voice.
My suggestion is to pick one specific situation to start working on. For example, both Buttercup and Petunia were afraid for their preschool teachers to even overhear their voices. We chose to begin with our focus on this fear of having their voices heard. We recorded a series of video clips of them talking and played a video for their teachers each day after class. Once they were comfortable with that, we then moved our focus to them speaking in front of, but not directly to the teacher.
You may want to start with the situation that is causing the biggest problem, being sure to break it down into tiny, manageable steps. Or, if that is too overwhelming, start on something that is less threatening with a better chance of success. Small successes build confidence and encourage the child to keep trying hard things.
Get the School On-board
Most SM kids have a hard time speaking at school. It can be challenging for you as a parent to help them since you are probably not with your child at school all day. Most teachers will have already recognized that your child is more than just shy. They are doing the best they know how, but many times the way they approach the child actually makes them less likely to speak (asking the child lots of questions, looking them right in the eye, guessing what the child’s response would be, and encouraging gestures as a substitution for speaking).
Teachers need detailed information about the reasons behind selective mutism, and they need training and coaching to learn the best way to approach the child with SM. They need to see the techniques in action, not just read a sheet of paper. We have found that there is a big learning curve, so it is important to have frequent follow-up with the teachers to make sure that things are progressing and to troubleshoot any problem areas.
In most cases, I would recommend perusing either a 504 plan or an IEP. There are pros and cons to each. We went with IEPs for my daughters and we are receiving the services and accommodations they need to be successful in school. It is also important to designate someone within the school to be the child’s key worker. This will be the trusted person that guides the child through exposures and step by step progress. Since the classroom teachers are so busy, often times a teacher’s aide, the school psychologist, or a member of the special education team is a great fit for this role.
Seek Professional Help
Many therapists and psychologists have never heard of selective mutism, or are unfamiliar with the treatment. It may be difficult to know where to turn. The Selective Mutsim Association has some helpful lists.
Even if you are unable to find professional help near you, some treatment centers offer web-based video consultation and counseling. There are also several intensive camps around the US that provide 3-5 days of intensive therapy for SM kids and training for the parents as well. While you are waiting to see a specialist or participate in camp, you can still start helping your child now. Check out my free Guide to Summer Exposures for things you can do now.
When we began this journey, I did a lot of research myself and I found a psychologist familiar with SM who served as a consultant for me and the teachers. This was great and got us going on the right track. However, Buttercup and Petunia had trouble speaking in almost all areas outside of home and to most people. The scope of the problem was just too much to manage by myself. After about a year and a half, we decided to have the girls work directly with a psychologist. This was just what we needed to jump-start their waning progress coordinate efforts in all areas of need.
Get Emotional Support
This is one thing I wish I had done this sooner. The emotional toll on a parent of a child with selective mutism is incredible! If you didn’t have some anxiety before helping your child with treatment, you are sure to develop it during the process. I am joking, but seriously, helping your SM child is not for the faint of heart. It is a roller-coaster ride with so many ups and downs and twists and turns. Finding a community where you can ask questions and share those ups and downs is so good to help you keep your sanity. There are a few live support groups and a bunch of Facebook.
Finally friends, I want you to know that there is not a quick fix for selective mutism. Progress takes hard work and time. So, as you start down this path don’t try to do everything at once or you and your child will likely burn out. Slow and steady progress will yield lasting results.