I'm so sorry you have to go through this OP. I'm sure it is difficult enough worrying about your DD, and trying to get her help, without being second guessed by relatives who really should be supporting you. As I type this, I think that is what you should say to them. That if they really want to help, they can participate by giving you emotional support, but they need to respect your ability to make good decisions about your DD's care and that second guessing you will only add stress.

I wouldn't worry about it OP. What is the current thinking on selective mutism. Is the child supposed to be catered to or accommodated, as in "what do you want to do today? go to the zoo or go to a movie? I'll draw a picture and you point to which one you want." I'm not being facetious, just asking. Because if the relatives are expected to accommodate, you need to inform them of that or it's a mutual frustration for everybody. There is a chance that they will just end up ignoring her if they are shut down to the point of not asking any questions, and that's not good either. I assume you have the best therapists you can find for this disorder. Ask them how people who aren't parents are supposed to interact with your daughter. I'm not sure that some of that coaxing from well-meaning grandparents is a bad thing if over time it might motivate your daughter in some way. I don't know much about selective/elective mutism but if there is an elective component or a behavioral component than motivation is an important part of coming out of it I would think. I do like the ideas of a letter or call before getting together, with information from the therapist added, as in "the therapists say for non-family members to interact such and so way with her--we are trying this to see if it help." This way you bring them in on being part of the solution instead of mystified. I think honestly your relatives don't know how to act around her. I don't think I would know how to act around a child who won't speak unless I was told by the parents. I do have a friend whose child had selective mutism. I am not sure they did the therapy route but in any case she is a very social tween right now who got over the problem.

OK, wow, I looked up Selective Mutism and learned quite a bit as it relates to social anxiety. I am now going to do what you don't like your relatives to do: suggest something!

But I'm not doing it in front of your daughter, so here goes:

There is a study that, if you haven't heard of, you might see if your daughter qualifies to participate in. I know a child who had a milder form of selective mutism (spoke fluently at home, but only to parents when outside the home) who made huge leaps after participating in the study. As in, one year later, I don't recognize the child sometimes as the behavior is so different, so relaxed, and the child speaks to people. I still see some anxiety/shyness but nothing like before. I still am amazed by the difference the intervention made. The study is at the the University of Maryland.

I'm also the director of a preschool and received information from University of Maryland about that study via email as they want to get enough children for their study (plus, it helps children in the process, which is a win-win).

Here's what I received in my email:

Drs. Andrea Chronis-Tuscano and Kenneth Rubin are conducting a National Institute of Mental Health-funded study examining two early intervention programs for shy children ages 45 to 64 months (3.5-5 years 4 months) and their parents. Research has found that both programs are effective in helping children feel less nervous in social situations. We are asking for assistance in the area surrounding the university to help us in distributing information about this intervention study opportunity to families of preschoolers who may be very shy. More information about our study and staff can be found on our website, at: https://sites.google.com/site/umdlittleturtles/umd-preschool-shyness-study


Good luck, OP. I know this is hard.

Anonymous wrote:

Anonymous wrote:Can you (or DH, depending on whose family it is) give them a heads up? Are you keeping them somewhat in the loop?

A few days/a week before a visit, I'd send an e-mail like this:

"Hey, Everybody,

We're so excited to see you! blah blah..

Larla's still working with her therapists and making progress. She likely won't talk in new situations, it's nothing personal, and the best thing you can do for her is not make a big deal out of it. Her therapist/doctor advises just talking to her and treating her like a normal kid.

And remember! There's nothing wrong with her hearing, so please don't talk about her condition as if she's not standing right there. If you have questions, please, ask DH or me after Larla goes to bed.

Love,

OP"

I "think" I would do this. That is, this seems to be what I'd like to receive, as an aunt, so I'd understand. But I'm not in your position, OP.

See, I think since they hear she's in speech therapy, they imagine that, given your daughter was in speech therapy 4 months ago and 8 months ago (at our last 2 visits), there would be a change by now.... but this isn't a quick change, like a lisp.

I really think they need to know you're in this for long haul, this isn't going to be solved by the next visit. So I think they (and especially your daughter, who hears all these things) deserve to know the real deal. This is elective mutism, define it, it takes in general x years to resolve, our daughter is working really hard with her therapists, I ask that you not talk about it with her around, and also, here is the best way to interact with her: (whatever that is - is it best to ask her direct questions when you know she won't answer? Or is it best to frame in yes/no question style so she can shake her head no or yes? And is it best to look at her to wait for the head shake or not? (My experience is with a child who had social anxiety and it showed in her not talking, and if you looked directly AT her she would shut down, but if we posed questions without looking at her, she'd answer them)

+1
I really think you have to address it in advance and very explicitly tell them NOT to talk about it in front of her. Remind them that she can hear just fine and has feelings just like any other kid, so their oggling over her isn't helpful. And tell them anything you think might actually be helpful for them to know.

And if, for some whacked out reason, that doesn't get the job done... that's when you go into "Pass the bean dip" mode.
Aunt: Larla's still not talking?
You: Not discussing that today. Pass the bean dip!
Aunt: You should do something about that.
You: Not discussing that today. Can I have more beandip?
Aunt: I have this friend of a friend of a niece's uncle's backside who said that essential oils might work.
You: Would you mind sharing the recipe to this delicious bean dip?

Anonymous wrote:Can you (or DH, depending on whose family it is) give them a heads up? Are you keeping them somewhat in the loop?

A few days/a week before a visit, I'd send an e-mail like this:

"Hey, Everybody,

We're so excited to see you! blah blah..

Larla's still working with her therapists and making progress. She likely won't talk in new situations, it's nothing personal, and the best thing you can do for her is not make a big deal out of it. Her therapist/doctor advises just talking to her and treating her like a normal kid.

And remember! There's nothing wrong with her hearing, so please don't talk about her condition as if she's not standing right there. If you have questions, please, ask DH or me after Larla goes to bed.

Love,

OP"

I "think" I would do this. That is, this seems to be what I'd like to receive, as an aunt, so I'd understand. But I'm not in your position, OP.

See, I think since they hear she's in speech therapy, they imagine that, given your daughter was in speech therapy 4 months ago and 8 months ago (at our last 2 visits), there would be a change by now.... but this isn't a quick change, like a lisp.

I really think they need to know you're in this for long haul, this isn't going to be solved by the next visit. So I think they (and especially your daughter, who hears all these things) deserve to know the real deal. This is elective mutism, define it, it takes in general x years to resolve, our daughter is working really hard with her therapists, I ask that you not talk about it with her around, and also, here is the best way to interact with her: (whatever that is - is it best to ask her direct questions when you know she won't answer? Or is it best to frame in yes/no question style so she can shake her head no or yes? And is it best to look at her to wait for the head shake or not? (My experience is with a child who had social anxiety and it showed in her not talking, and if you looked directly AT her she would shut down, but if we posed questions without looking at her, she'd answer them)

Can't you just tell them she was diagnosed with selective mutism and explain what it is?

Anonymous wrote:I would stop visiting with these people

Me too.

I have a low verbal kid- so not the same situation, but I get the same comments.

Best response over is a firm/polite 'we're on top of it'. That's it. Repeat if necessary.

You are on top of it and you need to shut down futurer discussion.

I would stop visiting with these people

Totally agree with the "we don't discuss this" comments. Just repeat ad nauseum and change the subject. Smile, and ask what they're doing.

You have to develop a tough skin, OP. Your relatives do not have any idea what's going on with your child. They are trying to help, even though their "help" is annoying. By saying "we don't discuss this" over and over, they will get the message, and you won't turn into the bad guy or worse, bad mother.

If your child had something simpler to deal with, you might welcome the comments. Try to look at it from their perspective. And let their insensitive comments roll off you.

Anonymous wrote:

Anonymous wrote:OP, I totally get where you are coming from.

Every time you tell them you are taking a break or getting her the best therapy or she's doing great or thank them for their ideas you feed into this being an acceptable subject of party conversation.

The first time someone makes a comment: "We're not discussing that today." Big smile. Repeat with less of a smile. Then, walk away.

The next comment or question: We're not dicussing that today. Sad look.

Aunt Dora: "Oh my god Larla's still not talking!"
You: We're not discussing that today." Smile
AD: But you need to try the snake oil therapy!
You: We're not discussing that tooooo-daaaay. (sad look).
AD: You mean you haven't called Dr. Quack either?
You: I'm going to get something to eat, Aunt Do! See you later!

Any attempts to elicit speech from your child: "We're not doing that today."

I agree with this poster. I wouldn't bother e-mailing in advance or otherwise engaging - it's just going to prompt them to come back at you. Just shut them down - repeat the "not discussing" phrases as needed.

I agree also. My son did not speak until almost 4.. not even "momma".. I would say to people "I'm sorry but we don't discuss anything in front of DS but oh my goodness, this dip is fantastic.".

Anonymous wrote:OP, I totally get where you are coming from.

Every time you tell them you are taking a break or getting her the best therapy or she's doing great or thank them for their ideas you feed into this being an acceptable subject of party conversation.

The first time someone makes a comment: "We're not discussing that today." Big smile. Repeat with less of a smile. Then, walk away.

The next comment or question: We're not dicussing that today. Sad look.

Aunt Dora: "Oh my god Larla's still not talking!"
You: We're not discussing that today." Smile
AD: But you need to try the snake oil therapy!
You: We're not discussing that tooooo-daaaay. (sad look).
AD: You mean you haven't called Dr. Quack either?
You: I'm going to get something to eat, Aunt Do! See you later!

Any attempts to elicit speech from your child: "We're not doing that today."

I agree with this poster. I wouldn't bother e-mailing in advance or otherwise engaging - it's just going to prompt them to come back at you. Just shut them down - repeat the "not discussing" phrases as needed.