Dear Sherry,
Your emails are really helpful. I am going to go ahead and start her on meds.
I need a script from her pediatrician, who is an old fashion,older woman. When
I told her about SM she had no idea and thought I was an over zealous mom with
exaggerated concerns. I am afraid she wont agree to giving me a script for her
and then I'm back to square one. Unfortunately the psych. cannot write a
script.
This only compounds the problem. Everywhere I turn for help I am met with
resistance and disbelief. Only my psychologist and this support group
understand the problem.
I too am proud of Kayla, tell her I said so.
I would love to hear more about her story. I will try to look up Freedom from
Fear on the Internet. Can you make a copy on video? or DVD? I can pay you for
your expense.
Thanks,
Victoria

Sherry Heckman <sherryheckman@...> wrote:
Victoria,
That is great she is making improvements. Keep building on those out of
school relationships. Yes, my daughter did take meds. It helped her
tremendously. I was met with much resistance from my husband as well. I
was ready to start her right away, only because I have been watching her
suffer so much, for so long. After Dr. Shipon-Blum made the recommendation
to us and developed a treatment plan for Kayla, he agreed if after 6 months
of working our treatment plan, she was not improving or not moving along at
a good pace, he would allow it. My husband is a paramedic, so he does
understand how medication benefits and improves patient's conditions, but
because this was his daughter, he just could not deal with that thought.
Not to mention the type of medication our children need (SSRI's), that would
really mean something was wrong with his child. I did have a great deal of
support from Dr. Shipon-Blum and her educating me on the what the meds would
do and how it works in the brain. I do take an SSRI, so I did have a
greater understanding of this as well. So, after the six months, with some
minor improvements, he agreed. She started in February of her first grade
year. If you are interested in seeing a little bit of our story, we were
involved in a documentary on social phobia, called "Afraid of People", which
was funded by an organization called Freedom from Fear. I am not sure if it
is still available for purchase though. It involved the lives of four
adults suffering from social phobia and then my daughter Kayla, was the only
child in it, portraying her selective mutism. The first segment on Kayla
was the day before we started her on medication, and then there was a follow
up segment a year later, after she had been on medication for one year.

I honestly can't say that all children respond to meds like she did, because
I know some who have not. Medication is really a personal choice and I
don't want to appear to be advocating for medication in anyway. I do know
that my daughter made very gradual and amazing improvements. It started out
as simply her body language changing, from that very ridge look to more
relaxed look. She began to do things I have never seen her do before, like
wave to the school crossing guard in the mornings, to being able to get out
of the car at school with more ease....instead of sitting there with her
hand frozen on the door handle as other kids walked by. The day she yelled
out of the car window on the way home from school to her friends "hi", was
an amazing situation. Each little step lead to more improvement. The best
way I like to describe my daughter and her experience with medication is, it
was like planting a flower seed in the ground, and every day we watched this
seed grow and develop into a sprout from the ground and then into a stem and
as the days went on, it began to grow taller and taller everyday. Then,
finally one day there is this tiny bud on the end of that stem, and each day
it opened a little more and then finally one day, it was the biggest and
most beautiful flower you have every seen. I cherish every moment of that
growth that I have seen in my daughter. I realize she will never be able to
walk into a classroom and announce she is there with a loud voice, and that
she will always have some reservation about her to do things in large
groups, but I can accept all of that as part of who she is a person. I did
take her off of meds in the spring of this past year (3rd grade), and only
noticed some minor set backs, but overall she has been able to continue to
move forward in her progress. She has many friends and does a lot with
them. I try now to allow her to do things to continue to improve her self
confidence. This summer I began to let her walk to her friend's house, go
to the swimming pool with her friends (which she has to pay at the desk on
her own, ask and purchase snacks on her own...etc.), and do things that
require to her to interact with people she doesn't really know one on one.
The classroom is still a struggle for her, she has a very hard time using a
loud voice (loud enough for others to hear her), and to do things such as
presentations in front of the entire class, but she is accepted by all of
her peers and the teachers are very accommodating with her. I know that it
will all improve in time though.

So Victoria, follow what your heart tells you to do with your daughter. If
you feel medication is the right way to go, then try it. Maybe if she does
well on it, like my daughter did, your husband will know you did the right
thing. I have no regrets about using medication, and my husband would be
the first one to tell you that he is so glad we made that choice. Mom's
usually know best! ;-) If you would like to email me personally, please
feel free to do that.
Take care,
Sherry
-----Original Message-----
From: Victoria Johanet, MSEd [mailto:victoriajo23@...]
Sent: Saturday, September 13, 2003 4:30 PM
To: selectivemutismsupportgroup2@yahoogroups.com
Subject: RE: [Selective Mutism Support Group] Victoria


Thanks Sherry for the kind and encouraging words.
I have great hope that she will come out of this eventually. She has
already made improvements from last year. Last year she spoke to no
outsider even in her own home. This year she will speak to children who
come to our house, but not in school. Her psychologist is recommending
starting her on medication to help the behavioral intervention. This makes
me a bit uneasy and my husband completely flipped out; that's one of the
reasons he is so against me taking her to see Dr. Kurtz. I discussed this
with a psychologist friend who advocated the medication. Did your daughter
ever take meds?
I feel that I am making huge decisions on my own, without my husband's
approval and it makes me feel guilty. I hate to feel like I am going behind
his back, but on the other hand, he does not support or understand the
diagnosis despite the fact that he came with me to talk to the doctor on
consultation.
If the intervention doesnt work, I will feel like I wasted money and went
against my husband. On the other hand, if I dont do it, I will never
forgive myself for not doing more to help her.
Only Moms of SM kids understand.
Thanks for sharing,
Victoria

Sherry Heckman <sherryheckman@...> wrote:
Hello Victoria,

Again, I don't respond much to this group, but your situation hits home as
well, so I thought I should respond. I understand your situation. My
husband had no understanding my daughter's SM either. It is a completely
heartbreaking feeling. I wonder if you feel like I did, and think that he
thinks you are making this all up or overreacting to the situation. I was
completely alone for a very long time in dealing with Kayla's SM. I can
remember the time in kindergarten, when I first got the term SM from the
school psychologist and my daughter's possible diagnosis and starting
researching it on my own. I went to my in-laws that day and told them I
finally had answers as to what was wrong with my daughter, and my mother
in
law said "I didn't know there was anything wrong with her" in a very
sarcastic voice. I completely lost it and started yelling at her
saying....no one believes there is a thing wrong with this child, not you,
her father or anyone. I explained to her that she was suffering terribly
in
school and could not interact or speak with any of the children. This was
a
turning point in her understanding, but it still took longer for her to
see
the things I did. For my husband, it took someone else, her kindergarten
teacher and the school psychologist to state what they were seeing in my
daughter, for him to finally start to understand. The complete understand
came when we consulted with Dr. Shipon-Blum and he got to hear from her
how
typical my daughter's behavior and actions were compared to other children
she had treated with SM. It finally helped him realize this was a real
disorder and issue we needed to deal with. That may be what you need. If
you have an opportunity to set up a meeting with the preschool teacher and
can make sure your husband attends, explain to the teacher before hand
that
your husband does not see the issue at hand. Maybe then, he will see it
in
a different light. I also think it is harder for men to accept the fact
that something could be wrong with their child. I am not sure of the
reason for this though.

Just continue to do the best you can for your daughter. I am sure you
understand that SM is not something a child can overcome over night. It
sounds as though you are doing well in preparing her for kindergarten.
Just
make sure you start the transition process in the spring to her new
school.
Take her to the school several times over the summer and visit her
classroom
as much as you can. Also allow her to meet her new teacher and spend a
little time with her, before school starts. If your daughter is not as
far
along in her progress as you would like her to be by the end of this
school
year, just keep hanging in there and continue to be understanding and
supportive. It is very hard to not get frustrated ourselves with the very
slow progress our children make. But just try to keep the positive focus.
Those baby steps usually lead to bigger steps down the road.

To give you a ray of hope, my daughter is now in 4th grade. She is very
social with her many friends, but still has some struggles in the
classroom.
Everyone in the school is very understanding of her, because of my
advocacy
I have done on her behalf, in the school. Last spring, she decided she
wanted to sign up for cheerleading in the fall. I was completely shocked
by
this, but decided that if she wanted to do this, I was not going to take
that experience and opportunity away from her. About one month ago,
cheerleading practice started up and she was on the team. She absolutely
loved it, but also struggled at practice. I continued to take her because
she wanted to be a part of it, and her coach was very understanding of her
and did not push her. The first game was last week, and she could not
perform. She stood with the group through the entire game not doing a
thing. As much as it broke my heart, I was so proud that she had come
this
far in wanted to do this. She did decide that she wanted to quit after
the
game, so after a long talk, my husband decided to let her give it up. It
really hurt him, more then me to watch her just stand there (you could say
I
have more conditioning to her situation then him). I would have liked her
to stick it out, for at least one more game, to see if it would get easier
for her, but he already gave her the okay to quit. As disappointed as I
am
in the fact that she could not do this, I have to look at in another way.
Three years ago, she would have never attempted to take on such a big step
like cheerleading. Just one more step forward in her ability to grow as a
person. Had I not let her try cheerleading, I would had held her back
from
experiencing life in a new way. She did come home on Monday from school,
as
ask for me to sign her up for basketball. That was too much for me
though.
I should let her try it, but I told her maybe next year she could do it.
So
now we signed her up for music lessons at school to learn how to play the
flute. I thought that might be more her speed, then basketball would be.
So remember....there is great hope down the road for your daughter to
flourish, even if it is at a much slower pace then other children.
Appreciate each tiny step forward.

Take care Victoria.

Sherry

13, 2003 8:58 AM
To: selectivemutismsupportgroup2@yahoogroups.com
Subject: Re: [Selective Mutism Support Group] Help fpr my daughter


Hi, I read your email and can totally relate to your story.
I find that dealing with my own husband is frustrating. I started taking
her to a child psycologist who is an expert on SM. My husband is opposed
to
this because he thinks there is nothing wrong with her. Thats because he
sees how talkative and normal she is at home. He doesnt see her in
preschool or birthday parties the way I do.
It's frustrating to deal with her problems all on my own. But I am
going
to continue to get her the help she needs. She is in her last year of
preschool (4 years) and I want her well for kindergarten. That is my goal
Good Luck with your daughter
Victoria



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