Looking back on our journey thus far, I am amazed at the process we have gone through and how far we have come. There are a few things I know now, that I wish I would have known from the beginning.
1. There is no quick fix for selective mutism.
It takes a lot of consistent effort from the child and a lot of dedication from the parents and other caregivers. The child has to take small steps and practice speaking over and over again. Finding the right treatment and therapist will help immensely.
2. Don’t waste time in therapy that is not helpful. Find an expert.
Few therapists really understand selective mutism. Find a therapist that has experience with SM, or is very motivated and willing to learn. There are evidence-based treatments that have been shown to help most kids with selective mutism. Precious time, not to mention money, is sometimes wasted on therapy that is not helpful. Many parents whose children have done intensive treatments at centers that specialize in selective mutism wish they had done so sooner.
3. Don’t wait for your child to grow out of it.
I heard it from so many people. “She’s just shy. She’ll grow out of it. So-and-so was shy too but look at him now!” Even though I knew from a young age that my child’s “shyness” was too extreme to be normal, it was hard not to feel like I was overreacting. I wish I had started treatment with an expert sooner and not just tried to do it all myself. Kids with selective mutism rarely just grow out of it. Generally, the younger therapy is started the easier SM is to overcome.
4. Parents play a key role in treatment.
Good therapists will educate the parents and get them involved in the treatment process. Don’t expect the therapist to do it all. Even after intensive treatments, parents have the responsibility to help the child continue to progress. The more parents understand how to help their child, the more progress the child will make.
5. There will be progress and regression.
It is so exhilarating to hear your child speak to someone else for the first time! On the other hand, it is so disheartening and frustrating when you see a child who has progressed slip back into old behaviors. Instead of panicking, realize that this is normal. Take a step back and start again with whatever treatment was working, or, if it wasn’t working very well, take the opportunity to try something different.
6. The refusal to speak is not a choice and many kids physically cannot make a sound when the anxiety strikes.
When I would observe my daughter freeze, I wish I had realized that I couldn’t just snap her out of it by threatening her or bribing her. Children with selective mutism are not just scared of talking, the literally cannot speak. When they get in a situation that makes them too anxious they have the fight, flight, or freeze response. Their ability to speak freezes. Some kids describe how their throat is tight and they can’t make a sound even though they want to.
7. Each child requires individualized treatment.
The evidence-based treatment for selective mutism has to be applied in a way that addresses the unique needs of the child. I have two daughters with selective mutism, but they have different challenges they don’t respond to treatment in exactly the same way. If I had known this from the beginning, I would not have kept trying to do the same thing for both of them when it was only working for one of them.
8. There is a learning curve for family members, friends, and teachers.
It takes time to understand selective mutsim. Giving an information sheet about SM to someone and hoping they will know just what to do is unlikely to yield good results. Watching an expert (video or in person) model ideal interaction with a selectively mute child is really helpful. The way you approach a child with selective mutism is very different from how most people interact with children. Adults, friends, and teachers need to learn and practice these new skills. Consistent follow-up is so important as these people might not realize how to keep the child progressing, or know how to respond to certain behaviors. I’ve learned to be patient with others and keep teaching!
9. Medication can be helpful for some children.
If children are having a very difficult time progressing, even with appropriate therapy, medication (SSRIs) can make a huge difference. We have not used medication at this point, but many parents who have made the decision to medicate their children say that they wish they had done so sooner. Parents agonize over this decision. Medication isn’t appropriate in every situation but it makes a huge difference for some children.
10. We are not alone!
When you look at all the other children in the neighborhood, at school, and at church, you may begin to think that your child is the only one that struggles to speak. Nobody seems to have heard of selective mutism – even professionals who should know don’t have a clue. I wish I would have realized that we are not the only ones struggling with this disorder. There are other parents and children that are having precisely the same challenges and feelings. It is such a relief to know that we are not alone.