Growing up with Selective Mutism

I grew up in a traumatic environment.  This was because of various mental health issues with my parents and I was subject to abuse.

I had selective mutism (SM). Selective mutism is a severe anxiety disorder which prevents you from speaking in certain situations.  SM most often develops between the ages of 3 and 7. People with SM freeze in certain situations, and can’t maintain eye contact.  Sometimes their throat goes tight so they physically can’t speak. They also have frozen and stiff body language, and sensitivity to noise and crowds.  SM is sometimes mistaken for autism because the symptoms can make the person appear that way, but the person with SM is not necessarily autistic. They can also appear as though they have a learning disability because they are expressionless, but people with SM often have above average intelligence. 

Because of my SM I was paralysed with anxiety, and therefore unable to speak outside of home. When I stepped outside the door, heaviness would descend on me, causing me to move slower and weigh me down more and more as I approached school.  Once at school I would find myself standing still and feeling paralysed.  I would walk to wherever I needed to go if I had to, then find the nearest corner or seat, and either stand or sit still watching others talking all around.  As far as speaking, the nearest thing I can compare is like a dentist injection where your face goes numb and the muscles won’t work.  It was like having one of these injections in the part of my brain that controlled my ability to speak.

I would stay like this all day.  I couldn’t ask to have my basic needs met such as putting my hand up to go to the toilet, or for a drink, or if I had forgotten my lunch money, or if hurt or bullied.   I couldn’t participate in lessons, or play with others in the playground.  Then, as soon as I came out of school to walk home, the heaviness lifted and I could speak again.

As a 4 year old, you can’t really explain what is happening when an adult asks you why you won’t talk at school.  You think how you feel is how everyone feels.  You think what happens to you is normal, even if it isn’t.  At that age you don’t know any different.  People thought I might be deaf, I might be autistic, I might have a learning disability.  They did all the tests and none of those things were found.  Consequently they decided it was a behavioural issue that needed correcting.

Teachers did not know what to do.  They encouraged me, disciplined me, got frustrated with me, asked me why I behaved that way and got no answer from me.  They sent me to the educational psychologist and the behavioural-emotional unit and they didn’t know what was wrong either.  Back then, SM was not an official diagnosis so they had no checklist to match my symptoms with.  I was trapped in isolation, and I didn’t know how to get out of the trap.  It felt beyond my power to escape from.  

Teachers would try and encourage others to include me, and in the end they resented it because they couldn’t get a response from me.  As a result, I spent lots of time clock-watching in empty rooms whilst others went off to chat with friends.  People gave up inviting me places because I would just stand silent and make them feel awkward.  I was watching the world around me as an outsider.

I enjoyed music and that was one thing that I could participate in non-verbally. Someone in my school music group kept saying, “God loves you”.  I wanted to know more because I was looking for someone who could help me talk and make me feel safe.  I got a feeling that God was there and it would be ok.  I don’t know how I managed to talk, but I managed a few words to let him know I wanted to know.  He gave me some books and a leaflet about knowing God personally.

I didn’t know what praying was, but I spoke to God and said to him I didn’t know if he was real or not, but if he was, please search for me and I would search for him.  I gave my life to God at age 17 alone in my back garden. I started going to church, and shortly after that got confirmed. I don’t remember what happened during the service but I remember feeling full of the Holy Spirit and I knew I loved God and was really serious about him.

Although I was going to church regularly, and was attending the youth group, I was still completely unable to talk.  I would go to the youth group, but people wouldn’t know what to say to me because I didn’t talk.  I would stand there in my silence, making people feel awkward, and would usually end up leaving on my own to walk home, terrified of the isolation I knew I was going back to, because I couldn’t talk to anyone and didn’t know how to speak to get a job or friends or anything.  Home became a place of panic because I associated it with enforced isolation.

There was one lady who invited me to help in the church office one summer.  I don’t know how we met but I know it was God.  She was the pastoral care co-ordinator.  She went to visit older people in their homes and have a cup of tea, and make sure they got to groups in church.  Every day she would ask me what I was doing and invite me to hang out with her.  Each day I would end up going to some older person’s house, taking them in their wheelchair to the church centre for a coffee morning or something, or folding the orders of service sheets in the office.  She didn’t seem to mind if I didn’t talk.  In later years I told her she had saved me that summer from complete isolation.  She said she didn’t realise, she thought she was just doing me a favour.  What she did made an impression on me that I will remember forever.

I was still stuck in my silence and paralysis when it was time to leave school.  I had seen my peers develop, grow, make friends, have fun all around me, but I hadn’t passed “go”.  I had spent my school life going to school, not communicating, and going back home at the end of the day not having spoken with anyone.  I was very delayed in my social and emotional development compared to others of similar age.  As I was approaching adulthood, my chances of getting a job and having a normal life hung in the balance, and I was also becoming very depressed because I was fully aware of my inability to function in the adult world. I thought that God was going to keep me isolated and I would never get a job because of my SM.

It was a Christian family who helped me on my way to recovery.  They felt it was right to have me come and live with them when I had just turned 19.  I had very little communication; I mainly used shoulder shrugs and gestures, body language and facial expressions although I did speak the odd word.  Things like saying hello, goodbye, please and thank you were incredibly difficult.  Their response to this was unlike any I had experienced, in that they sent me constant messages that I was loved and accepted unconditionally, and they didn’t feel awkward around my silence.  After a couple of weeks the heaviness and paralysis began to lift.
 
This was due to them reducing the pressure to speak and I felt safe around them.   After a few weeks they also told me that I had become a part of their family, and that God had told them they were to be my family for life.  God had given them a scripture which said, “God places the solitary in families, and brings those who are bound into prosperity” (Psalm 68:6). I understood the putting me in a family part at the time, but not the second bit.  At that time, I didn’t realise how bound I was, and the process I was going to be taken through.

One day, I managed to say my first sentence to them - “I want to be able to talk and be normal”.  It was a desperate plea that I had wanted to make known for all those years, and I had managed to verbalise it for the very first time. This was just the beginning of a long road where they were to support me, nurture me and teach me to interact, and learn all the skills I had missed out on learning whilst growing up.   They supported me through many anxiety issues which arose as a result of my past isolation and abusive home life, including anxieties so severe I couldn’t be left alone without supervision.  

The first occasion my new family went on holiday and left me home alone, I was hit with unexpected severe anxiety. It was a delayed reaction to the isolation I had experienced at home.  I was suddenly in an empty house again and the memories of isolation came back.  I don’t know if it was PTSD type thing or panic disorder and that doesn’t really matter, but it was so severe I never thought I could ever get through it and be alone in the house.  
I didn’t know if God was ever going to change this for me. One time when I was in a car coming back from a trip where I had not been able to talk, I felt I could not live with my SM any more.  A certain song was playing in the car. God used it to tell me he wanted me to stay alive because he needed me here. I couldn’t understand why, but I knew that he did. I’m glad he did. 

My new family gave me a lot of support and taught me about renewing my mind by believing what God said instead of what my thoughts said.  They taught me about the armour of God, and showed me that God didn’t want me to be trapped in fear and he wanted to help me speak and give me a job and friends.  I took scriptures and read them again and again, and decided to believe what God said, even if my feelings told me otherwise.  

I used to have to go to someone else’s house if the family went out, but gradually I managed to stay for longer in the house before needing to go to someone else’s house.  I also started to be able to speak and made my first friends.  This all took a lot longer than others who could already to all those things at that age.  I was in my thirties before I managed to live in my own place, but it was the most amazing breakthrough because I never thought it possible, the anxiety had been so severe.

It has taken me a lot longer than others, but I have come further than I ever expected.  I am able to live independently without constant emotional support, which is something I always wanted to do.  I not only became able to speak, but the desire of my heart was to become a teacher.  The desire had always been there but someone who can’t speak will never be a teacher.  God has been so good to me and even managed to follow my dream and I achieved my PCGE, and now have a teaching job where I teach staff in care homes. Every time I stand up in front of a group and talk to them, I am in awe of what God has done.  I am so blessed.

I am so blessed that I just do what other people do.  I’m no longer watching the world go by as an outsider.  I am part of things and not isolated as if looking at the world from behind a glass wall.  I want to help others who are socially isolated for whatever reason, whether they have mental health issues or are simply older and isolated at home.  I want to show the love of God to people, just like my family did and the lady at church who helped me that summer.

I am now diagnosed with obsessive compulsive disorder [OCD]. Anxiety is still part of my life, and something I am continually learning to manage, but I now have friends and family behind me, and most important of all I have found my voice.  It is a great feeling when people genuinely want me around and don’t feel awkward around me.  No more hours of isolation in empty rooms, no more clock-watching and people watching; now I no longer feel isolated when I come home, because people are just a phone call away – all because I can talk.