selective mutism - any experience with this?

[Jokat]

My dd1 (just turned 4) has been in pre-school since the age of 2.5. After ten months, her key worker talked to me about her not ever having spoken to any of the children, even though she was happily talking to several of the teachers and also in the presence of the other children, only her speech was never directed at them.
She does have several normal friendships with girls and boys who are my friend's children and chats with them freely and chirpily.
The teachers at pre-school have tried everything they can think of, incl. sticker charts, forming very small groups for activities etc to get her to talk to other kids there. Last year, she did finally start talking to a little boy who loved her so much that he never gave up and talked at her endlessly until she "gave in". He was the only one, apart from a little girl who she talked to on a few occasions when the little boy wasn't there. He then went on to big school in September.
This school year she befriended a pair of twins, and while she played with them often, and they often held each others' hands, giggled, laughed and sat together, she did not speak to either of them until this week. (I was sooo happy, and so was she! ) She mentions other children to me occasionally, but doesn't ever speak to them.
Anyway, I have been looking into selective mutism and she seems to tick quite a few boxes. Our occupational therapist (dd has got cp as well) has arranged for us to get onto the waiting list for speech and language therapy as I heard they would be the relevant people to get in touch with.
I would love to hear from anyone who has dealt with selective mutism before, to hear how and by whom it was diagnosed, who got involved to deal with the issue (speech and laguage therapists or educational psychologists?), and how your dc got supported in school if at all?
Thank you very much for reading. X

[aladdinsane]

Not directly but I read a very good book by a therapist working with selectively mute children
she was against the dreaded sticker charts and other behavioural methods
she assumed the child would talk and spoke to them as if they would without making any big deal out of it if they didn't
She said it works in a non established relationship- so a new ( to the child ) member of staff
I've been racking my brains to think of the author and its just come to me - Tory Hayden - but sorry, I can remember which one

[Jokat]

Hi aladdinsane, thank you for responding. I'll see if I can find th eright one. I'm not surprised he wasn't keen on sticker charts etc. It only made more of an issue out of it and made her a bit obsessed, e.g. she would anounce (unprompted) before pre-school that she would not speak to any of the children and would tell us afterwards that she didn't. When we realized that this wasn't working either, we stopped it and all agreed (incl grandparents, staff etc) not to bring it up any more at all and if she brings it up herself to only reply with a not-bothered "okay" or "that's fine". Since then she has mentioned it less and less, so having taken that pressure away has certainly helped in that respect.

[MrsJourns]

I've worked with three children over the years who would have been classified as selectively mute. The first two were twins in my Reception class, they happily played with each other and over the course of the year started to mix with a few children in the class. By the time they left the school in Y6 they were both loud, boisterous members of the class. From my recollection S&L were involved with both girls, and they were diagnosed as selectively mute. They would go off for a weekly appointment but I don't remember much contact with school.
The third child was a girl I taught in nursery. I had taught other members of the family and they were all quiet children who were bright and very popular. She was incredibly able and always playing with other children, she just didn't talk. She started talking a little by the end of nursery, and by the end of Reception she was talking in front of the whole class. In her instance S&L weren't involved. In all cases we didn't make a fuss (when they were quiet or when they started talking), included them in all activities, and monitored their development over time. I know the condition is far more common in girls and in my experience the children I have dealt with have 'grown out of it', given time and no pressure.

[Jokat]

Thank you very much everyone.
She does sometimes give a response (not so much to children but to adults she's not very familiar with) by telling me the answer, or she asks me to respond to them. I feel better now that some of you say this is a step in the right direction.
I've read somewhere that this condition only gets worse if not treated, so it's very interesting to hear that the children you worked with Mrs Journs seem to have grown out of it without much professional input.
Thank you all for giving me some precious insight into how this can turn out!

[DiamondsRaGirlsBestfriend]

this might be useful info www.nhs.uk/conditions/selective-mutism/Pages/Introduction.aspx

[Jokat]

Thank you Diamonds, just had a look, it's very helpful!

[Wallace]

My dd had SM throughout nursery and into primary 1. No pressure was put on her to speak and she had a few cards to say when she needed the loo or she felt ill. The classroom assistant knew sign language so the whole class was taught songs etc with sign language so dd could join in.

Halfway through P1 (age 5.5) she started speaking a little. She is now in P7 (last year of Primary) and speaks confidently and clearly in front of the whole school

[Jokat]

Wallace and Whistlingwaves that must be heart warming
When I found out on Monday that dd had spoken to her school friend (a girl twin) for the first time that session, I almost welled up! And then again when she spoke to the twin brother the very next day... It probably helped that I had successfully invited the twins to dd's birthday party last month, and I'm determined to make sure I arrange playdates for dd once she starts big school, so that she gets to spend some time with her class mates outside the school setting.

[StanleyLambchop]

My DD had this in reception & Yr1. Spke to the other children ok, but not to adults at school. In yr2 she had a very kind and understanding teacher who did not force her to speak at all, and did not make a big deal if she did not. Eventually she started to speak a bit, in small groups. It carried on from there, and by the summer term yr2 she was chosen to represent the infants in a public speaking competition. So do not get too worried as yet- some children just seem to take longer to find their feet. Presumably she talks ok at home? (My DD would not shut up at home, we did not recognise this quiet non-speaking child that the school described!!!)

[Jokat]

That's reassuring to hear. Yes she is a right old chatterbox at home and at grandparents' and family friends' houses!
We have an appointment with her paediatrician later this month (routine check-up) so I'll see what he thinks. And we're still on the speech and language therapy waiting list.

[olivo]

Hi jokat. I have read your thread with interest as we are currently watching DD aged 3.4 very carefully. At the moment she would be termed as a 'reluctant speaker' but her SALT has worked hugely with the nursery to get her to this point, and we are worried about the transition to school. Her key workers have been brilliant with her, I am hoping her reception teachers will be just as good. The thing I find the hardest are the comments from other parents- we go to parties etc and she doesn't utter a word, even to me. I have persisted though, as advised, as she is not distressed by them. Same with playdates, although there now one or two ver yclose friends in whose prince she will speak.

[Jokat]

olivo, how easy did you find it to get the SALT on board and not just get fobbed off with the explanation that she's probably just very shy? (This is what the inclusion officers said who reluctantly came to dd's pre-school when asked for help by the staff)
And have you contemplated trying to get a statement for your dd when she starts primary school, so that she will get support wrt her communication skills?

[olivo]

DD has been under SALT since about 22 months as we thought she had a speech delay. That part was easy, I phoned the HV and she made the referral for me. Lots of DDs support has been SALT going to nursery to work with her key workers and giving them strategies to encourage her speech. I have also attended sessions aimed at this too.

W are not in Uk so not sure about statements, but SALT will work with her new school and the SENCo is already aware that there may be issues. I think she will be logged as a reluctant speaker for now.

[Jokat]

I see. That sounds like a great support system! So maybe my dd will get sufficient support, too, once she is under SALT (if it's still necessary by the time we finally get to the top of the waiting list lol). I should find out at the appointment with her paed later this month. Thank you for sharing olivo.

[HotBurrito1]

Yy to the no pressure, no big deal approach outlined by others. Have seen it work with a few kids in nursery. It's lovely to just react all casually when they finally start speaking up.

[olivo]

Good luck jokat. The HCps I saw were pretty supportive but I got a lot of eye rolling and just leave her to it, from some family and friends who think I'm being pushy and PFB ( she's not my first ) She is summer born too so h enough against her starting school as a young one.

Hope your Paed is on your side, they should get your the support you need.

[Jokat]

Yes HotBurrito1 I feel quite bad now that we tried the sticker charts etc, but at the time we just couldn't think of anything else that was left to try and at the time we thought it wouldn't hurt to to give it a go. It's also very hard not to be excited when she talks, because she is so proud of herself when she has talked to someone (e.g., over the last few weeks she has also talked for the first time to her cousins and my SIL, and also to my mum over the phone and skype), she goes on about it for many days afterwards, bursting with pride! But I do manage not to voice any expectations wrt the talking any more.
olivo, our paed is lovely and has looked after dd since she was less than a year old. DD was born very prematurely and has a fairly mild form of spastic diplegia, hence the pending routine appointment. I'm sure he'll be supportive, as are our lovely physio and OT who arranged the referral to SALT. So I'm quite optimistic, just hope the SALT has some experience of selective mutism so that she can make an informed judgment on what we are dealing with.

[charitymum]

Hi if you have not looked already try www.smira.org.uk

[Jokat]

Thank you charitymum, I have had a look there already.

[GregBishopsBottomBitch]

My daughter has just been diagnosed with this, she refuses to talk more than a few words at school.

[Jokat]

Greg could you share how your dd got diagnosed, i.e. who you approached when you first realized there was a problem and how things went from there?

[GregBishopsBottomBitch]

It was school that started it, because they had concerns (shes 5), so she got referred for hearing, paedatrics and Speech and Language Therapy, hearing was fine, Paed Doc said he could see nothing wrong with her, like autism and the like, S and L person, went to see her at school, and has written in report that is what my DD has, so hopefully now it she can get the help she needs, but right now, since its a diagnosis was a week ago, not much has been done yet, hopefully the school will have a better idea of how to deal with her, because at homes shes fine with me.