Mari's story

Our family includes my daughter (11 years) and son (8 years), along with me and my partner and his children. My children live on alternate weeks with us, and with their father. Our family is bilingual.

My daughter has difficulty speaking in many situations. I noticed her difficulty when she began kindergarten aged 1½. She did not speak to anyone, and did not eat anything there for the first six months. Going to the toilet was also difficult, although she had no problems with this at home. When my daughter was aged 3, her father’s cousin who is a pediatric doctor, gave an unofficial diagnosis of selective mutism. She was officially diagnosed aged 4.

We initially received help from the children’s clinic, neuvola, and then from the family clinic, perheneuvola. Help was not easy to find, rather required many requests and phone calls. Initially, the therapists in the family clinic were close to retirement and they had an old-fashioned view of selective mutism. My daughter got the opportunity to meet them quite rarely, and the therapists believed that she had experienced some kind of trauma, or that as her mother, I had caused her mutism. Before retiring, however, they offered us the opportunity to participate in EMDR (Eye Movement Desensitization and Reprocessing) therapy, which is meant to treat psychological trauma. The therapists did not recommend the treatment, just suggested it ‘if you would like to try’; they continued to believe that if I as a mother ‘would behave properly’, more therapy would not be needed. Mari’s father and I wanted to try EMDR and I am very happy with the result. Progress has been slow however, as my daughter only got to meet the therapist once a month. However, for various reasons, the system changed and my daughter got to meet the therapist once a week for the last two years – the progress has been remarkable!

Most difficult has been the feelings of helplessness. Despite reading a lot about mutism, it has still been difficult to fully understand what my daughter has had to bear every day. Additionally, her behavior has been hard to manage; she poured her rage and frustration on me every day when she came home, didn’t eat although she was hungry, wouldn’t (couldn’t) go to sleep even though she was very tired. Mari’s little brother was a baby at that stage; he didn’t sleep through the night until he was two years old. Lack of sleep, along with my daughter’s challenging behavior made me very tired, and unfortunately, my nerves frayed, I admit. I suppose the most difficult thing for Mari was that nobody understood her. Probably, as she was still so young, she didn’t have the words to explain how she felt, and what her life was like. For other reasons, I was a bit down, and I wasn’t able to sufficiently help Mari, although I tried my best.

When Mari was in pre-school, I began to practice mindfulness, which I still now practice daily. It has been a life-saver for me. I have tried to teach it to my children, but they are not interested in practicing (which is very frustrating, because if they would just try it, I am sure that it would be useful to them, especially to my daughter). Instead, I focus on feelings and behavior, and I have noticed that this approach is more successful. I have lately read about Cognitive Behavioral therapy (CBT). I think that CBT could be very useful to people with selective mutism.

Mari has many strengths. She is clever, hardworking, friendly, helpful, energetic, agile, inventive, emotional, and doesn’t give in easily. There have been many steps forward, although they are sometimes very small steps. Nowadays, my daughter speaks to me in public places and often in front of other people, who do not belong to our circle of family and friends. She smiles a lot, and both talks and sings at home continuously. She speaks to her grandmother on the phone and sometimes even to my sisters (they all live outside of Finland). She occasionally goes to the shop by herself, loves to buy clothes, and changes her clothes every day (at one stage, I had to wash her clothes every evening so that they would be ready for the following day, as she would only wear specific clothes each day). She needs to know ahead of time what will happen, but now rarely explodes if something unexpected happens.

I would like to say to other parents – be patient, both with yourselves and your child. Do not blame yourselves, selective mutism is (usually) nobody’s fault. Give your child space to find their way of communicating with others. Do not avoid situations in which your child ‘should’ talk. Instead of speaking for your child, let your child speak via you – this is encouraging and enables your child to tell their opinions.