Wednesday, September 17, 2014

My teenager doesn't talk - Selective Mutism

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:

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.

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.

Clinical Trial participants are people too

Patients who participate in clinical trials want things to change.  Should Patients have any control over the clinical trial process? Traditionally, clinical trials are run according to the protocol designed by the pharma company, driven by statistics required to prove a drug is safe and effective. The visits are designed to collect the required data.  Sites are recruited, then sites find the patients.  Patients come in for their visits, if they are eligible for the trial, they enroll, receive their meds and come back for visits as dictated by the protocol.  When the study is over, they will typically be told what treatment they have received, and may receive some follow-up care.

Patients want all this to change.  Patients want to talk and communicate with other patients, and they want to have a direct impact on the clinical trial process.  It makes sense that patients would like to see some flexibility in their visit schedule, or want to have less blood draws.  However, according to speakers at a recent patient-centric conference, patients want these things, but they also want to help determine quality of life (QOL) and safety and efficacy indicators for their individual condition, and they really want access to their data.

One of the patient advocates worked with a pharma company that had a study recruiting patients with ‘Mental Illnesses’.  The advocates explained using ‘Mental Illness’ to describe their condition wouldn’t attract many people. They changed the title to be a study for ‘Emotional Wellness’ and were able to better recruit patients for their clinical trial.  According to this advocate, patients want to clinical trials to look sexier and more appealing.

Some pharma companies such as Janssen are introducing patient portals where a patient can login, see their visit schedules, descriptions of upcoming procedures and visits and better understand what will be happening during the trial.  Patients can see a google map showing site location and sign up for visit reminders via text or email.

Sites also want to be more involved with the process. Typically sponsors give the sites they use a rating or quality score based on how the site have performed in the past.  Sites want to know what their scores are and they want to use this data to improve.  Sites want to know how they performed related to other sites.

Some pharma companies have concerns over patients using technology to communicate their clinical trial experience.  They are concerned that patients may report adverse events via social media before they get reported to the FDA.  One patient, Jeri Burtchell decided to blog about her clinical trial experience and potentially unblinded the entire trial.  Jeri has MS.  She participated in the trail and she felt strongly that she knew she was randomized to the investigational product and not the comparator.  She wrote about her experiences as they were happening in her Blog, not realizing the implications of potentially unbinding a study.
Read about it here:

Some recent developments that are changing the clinical trial landscape today:
• In 2013, Pfizer launched the Blue Button Project which enabled patients who participated in clinical trials the opportunity to download their individual clinical trial data.  This data can be used to improve their overall health and wellness and can be shared with their healthcare providers.
• Walgreens is offering services to keep patients in clinical trials. They are offering to gather vital signs, weight, etc. in place of the patient visiting the clinic for these checks.
• Pharma are now developing home based trials, some that involve collecting data via a wearable device or smart phone.

I’m not convinced patients need to be involved in the protocol planning process since in my opinion, it is really a numbers game to make sure we can statistically show safety and efficacy.  But I do see some areas of concern and potential improvement regarding the use of technology.
What are your thoughts?