My daughter Sydney has Selective Mutism. She is 14-years old and she doesn't talk in school at all. She doesn't talk to other kids in Girl Scouts, or soccer or birthday parties. Heck, she doesn't get invited to birthday parties. There are no phone calls or sleepovers. She can't call a friend to double check homework, or ask to go to the bathroom in school.
Sometimes we forget all of this because at home she is just Sydney. She talks and sings and does everything all other 14 year olds do. Although, she has never talked to my sister, or my mother, or my best friend. She talks to those few of us she is comfortable with and that is it. Except in a few areas where we have made progress.
Below is a bit of a history.
2004, Pre-Kindergarten
Notes to an occupational therapist Sydney was seeing before we every heard the term 'Selective Mutism'. Many of these traits when she was 4 years old are the same today at 13 years old:
- She
gets very upset at things that make her uncomfortable. For example, she has received several
birthday party invitations from kids at school. Every time we open one, she screams,
throws herself down on the floor and cries. She doesn't want to see the invitation
and absolutely doesn't want anything to do with the party. This also happened recently at school when
a teacher took her pasta out of the container it was in and put it on a
plate. She usually eats it right out of the container. She got very upset
it was on a plate (throwing herself down and crying).
- She doesn't like to play alone and doesn't like to be alone. She will migrate to whatever room her
brother or parent is in. She never
ever will play by herself.
- She
has no interest in toys. She will
want to play with a toy if her brother is playing with it, but won’t be
interested in playing with it without him.
I have tried to get her interested in dolls, barbies, legos,
etc. The only activity she will do
without her brother is play a computer game. She very much likes small textured
objects such as rocks, and beads.
She will hold them as long as possible.
- She is
extremely shy, especially in unfamiliar situations. Several weeks after starting school I
got a call from the teacher asking if she could talk. I recently had a meeting with Thelma and
mentioned that Sydney has a lisp, Thelma was surprised because Sydney has
not talked enough for her to even notice it. Sydney has been there since August.
- She
very often writes out words starting with the right side of the page and
moving to the left. For example,
she writes her name ‘Y E N D E S’ and starts with the ‘S’. She switches between her right and left
hands.
- Her teacher says she has very good fine motor skills, but poor gross motor skills.
- She
rarely will respond verbally at school.
She will nod her head or point.
- She
talks quite a bit at home. I feel
her communication at home is very normal for her age.
- She is
very aware of her surroundings and has excellent recall. She knows the names of all the kids in
her class.
- She
tends to be a perfectionist and gets upset if she can’t do something (such
as coloring) to her satisfaction.
Later this year when Sydney was 7, we saw a therapist who first said she felt Sydney has 'Selective Mutism'.
2008, 3rd grade:
We saw one counselor, then another who did some play therapy with Sydney with no real success. Neither of these counselors had experience with Selective Mutism and I got the impression neither of them knew how to put together a plan that would help.
2010, 5th grade:
We saw a counselor at Mid-Atlantic Counselling for 8 visits. This was pretty pointless since Sydney wouldn't engage in any way. The counselor we saw didn't have any experience with Selective Mutism and I felt that progress here would be unlikely.
We have been working on ordering at restaurants. Sydney won't respond to a waitress, but if we re-ask the question 'What would you like to order' directly to her, she will respond to one of us. We have had success with this, although she won't look at the server, and she talks very quietly.
2011, 6th grade:
Sydney was scheduled to switch to Middle School and we decided to put her in a smaller Montessori School hoping that the more personalized attention and smaller class size would help her be more comfortable.
Met with Selective
Mutism Expert, Dr. Shipon-Blum (website
here) who gave us several an overview of her
technique to help kids with Selective Mutism.
It involves starting with non-verbal communication and rewarding the
kids for interactions. We have
implemented many of the recommended techniques but are finding some huge
challenges because Sydney isn't very reward motivated.
Some notes:
Communication:
Sydney is
comfortable enough to talk only with a few people, basically her immediate
family (mother, father, brother, sister), and a few people she has known for a
long time, such as her grandmother and a few neighborhood friends. Sydney will not talk to others that she has
known for her entire life such as her aunt and uncle or her parents friends, or
her friends parents or girl scout leaders.
Sydney will not talk to her school teachers or any adult in school. She
has had a few teachers that have had more success than others. The most successful have gotten Sydney to
read to them (as required for state testing), in a private setting. She will not answer questions or read in
class when she is called on in front of others.
If she has a problem or a question she will not ask for help. Within the family, she is very animated,
descriptive and funny.
Easily
frustrated when she can't express her thoughts/feelings
Sydney
typically won't express an opinion, mostly answering questions with 'It's OK'
or 'I don't know'. When people ask her
name or age she simply will not look at them or answer causing an awkward
silence. When she is frustrated, quite
often she can't express why she is frustrated and will cry or throw
things. She was called on by a
substitute music teacher last year and wouldn't answer a question. When the teacher insisted, Sydney threw her
recorder and started to cry.
Slow Moving
Sydney
just finished sixth grade in public school.
She tests in the 95th+ percentile for reading and math. She is an avid reader and a smart girl. She
tends to take an excessive amount of time to complete all tasks, homework,
housework, putting laundry away, tying shoelaces, showering etc. She tends to be slow to start, slow to
progress and slow to finish. There is no
sense of urgency in anything she does.
If we try to 'hurry' her along, she gets frustrated and may cry.
Sensitive
Sydney is
very sensitive and cries easily if her feelings are hurt. This mostly happens when she is
misunderstood. For example, if she
wanted orange juice, and it was served with ice, she would be upset and may
push it away or may cry.
Doesn't
want to be center of attention
Sydney
doesn't like to be the center of attention.
She doesn't like to try new clothing or hair styles or do anything that
singles her out. This is a problem for
projects at school where the kids should dress up like a character, or wear all
one color, etc. She doesn't like to
share homework with anyone. If somebody
accidentally sees something she wanted to keep private, she most likely will
rip it up and cry. Sydney is comfortable
being alone in a room for long periods.
Words she
won't say
There are
many words that Sydney won't say. An
example is 'Spongebob'. Sydney loves
watching spongebob, but will say she is 'watching television'. If she wants to watch spongebob, she will ask
if she can 'watch television'. Sydney
won't say the names of our dogs, Roxy and Rico; she won't say many peoples
names such as Aunt Gail or Megan's boyfriend Ben or Ethan's friend Marten. She will say 'that person', or 'Ethan's
friend'.
Sydney is
very observant and typically knows the name of everybody in her class or
camp. She also likes to 'snoop' and read
chats, emails, notes written by others.
Sydney has
never been a big fan of toys preferring rocks, marbles and textured objects to
hold. She can do this for long periods
of time.
Sydney
likes: spongebob, webkinz, swimming, rocks, pasta
7th Grade
We decided to switch to the public Middle School, mostly because Sydney hadn't made any friends or progress at the Montessori school, and she desperately wanted to be in the Public School. We have a student accommodation plan that includes giving her an open bathroom pass so she doesn't have to 'ask' to go, having the teacher asking yes/no questions as much as
possible, and allowing alternative assessments when an oral presentation is
required.
Some challenges have been:
- When starting a new class second semester, she didn't answer to roll call and was marked absent.
- She won't ask to go to the bathroom or use her 'bathroom pass', so she pretty much runs home at the end of the day.
- She won't ask for help if she doesn't understand something, or doesn't know where to turn in her work
Sydney enjoys 'talking' online, especially about SpongeBob. Here is a link to a form where Sydney will answer questions about herself that shows how witty she can be!
We put her in a summer camp with her one friend she will talk to. Sydney hated this camp, but attended for the two weeks without any incidents.
8th Grade
We've stepped things up a bit since she will be in High School next year. Sydney attends social classes weekly with other kids her age. We visited a new councelor who works with kids at her school. She met with the councelor prior to bringing Sydney to see her and strongly recommended that the first meeting be something fun like a game or other activity. Although the councelor agreed, unfortunately she didn't plan anything and didn't have anything prepared, so she started trying to ask Sydney questions. This was horrible, Sydney sat head-down the entire time obviously umcomfortable and agitated. We never went back there.
In order to encourage Sydney to interact with others, she and I both volunteered at a local bird rescue organization. Sydney doesn't enjoy doing this at all, but she knows she has to do something over the summer, and she receives volunteer hours she needs for school by helping at the rescue.
We had some success at the bird rescue, Sydney would answer some direct questions such as 'Are those clean or dirty' refering to dishes. She was more hesitatant answering personal questions such as 'What grade are you in' or 'What school do you go to'. She would non-verbally answer all yes/no questions.
We also had success at the hair stylist. When we went for cuts, I was getting my hair cut the same time as Sydney, so I told her that she had to say how she wanted her hair cut. I recommended she say 'just a trim', and she did! I was so proud!!
9th Grade, High School
Here we are in High School. Our first teacher meeting went well. Sydney is in an academically challening program called the Cambridge Program and the teachers there are concerned she won't be able to participate fully in group projects, but we are going to give it a try. The science teacher said that when he asked her name, she pointed to her name on his list. Sydney really wanted to go trick or treating but I wouldn't let her go alone and nobody asked her to join them.
We went to a new behavioral specialist at a.i. DuPont hospital for Children in Delaware. My main concern is not her SM, but her inability to identify her feelings. She is unable to tell me how she feels about anything. It's almost like she is neutral about everything. She doesn't have any goals or interests and it is just sad. I am hopeful for a new plan of action.
We switched her anxiety medication and now she is humming Christmas songs constantly.