Selective Mutism

Sigma Force

Hi, our DD was diagnosed with selective mutism a few years ago.
Does anyone else here have kids with selective mutism? Esp. anyone in the midlands region?

More info. about it http://www.selectivemutism.org/

kiffer

What does DD mean?

Sigma Force

Supposed to mean darlin daughter.

Alice1

Guineapig, our DD was diagnosed with SM and received treatment. She is much better now - although still has the disorder (obviously).

How old is your DD and how is she now?

Thanks for the link btw.

sousou

hi all , my daughter has selective mutism, i know theses posts are old .i just found this now and was wondering is there any support groups formed by parents of children with selective mutism etc.

ps. alice1 pls tell me what sot of help did you recieve for your child
thanks

Sigma Force

Been meaning to get back to this thread.
The site I posted isn't working atm.

My daughter was diagnosed when she was around 4, never noticed a problem at home it wasn't until she entered playschool that she started speaking less and less. There was a big emphasis on being good and quiet in the playschool and she took it too literally and became paranoid about speaking, perhaps a bit of bullying too could of triggered it..yep small kids can be pretty mean if they want to be.

It was a gradual thing she was 2 yrs in playschool and then she stopped completly talking by junior infants. She's 11 now and in fifth class.
The school have been great, it's important to have the support of the teacher and principal, some parents do have problems with teachers not understanding or not having the time to learn about it so kids can be left behind in the class room.

A big change happened about a year and a half ago when the class got a new class room assistant, someone new coming into the classroom who had read up a bit and understood her. She just asked her a question and our daughter answered ..quietly. The very same day she whispered to her teacher which none of us expected, it came out of the blue.

The sight of a new person who didn't make any fuss, just casually asked her a question and didn't stand over her waiting for an answer seemed to help.
Rather than looming over the child you just ask a quick question if they answer just say thanks and move on rather than making a fuss.

SM kids hate a fuss being made and my daughters biggest fear is if she did brave it and speak to a classmate they would all rally round and make her the center of attention and she would just be mortified. So her best friend of 5 yrs has never heard her speak.

With the cut backs her class room assistant was let go, so she found it difficult in 4th class from then on and became quieter again.
She also had a change of teacher this year, luckily a new class room assistant ..not hers arrived who happened to be her best buddies mum, again a relaxed person who put no pressure on her to speak.

Because she was doing the same job as the last assistant our daughter started to whisper to her and will read quietly with her (one problem teachers have is they can't test childrens reading because they won't speak so recording them at home can help only if the child will agree to it).

She doesn't speak to her new teacher and so only whispers to one adult in the whole school, won't say never but it's unlikely she will speak in school now but there's always hope.

We've had little support from the hse waited an age to get her seen to and then she had a couple of sessions with a pshycologist and then she had to leave and wasn't replaced for ages. We were to put her on a waiting list again..but get this got a letter to say she was to be put on a waiting list for a waiting list! Well at this stage, now in fairness the school have worked hard in trying to push it, I give up on ever getting more help for her.

What's the point in putting her on a waiting list for a waiting list, it's ridiculous. She's had more progress having a few understanding teachers and class room assistance than any session with a shrink.

This is just my experience of sm but I feel at least of our kid, that confidence is a huge issue. They usually like to hang out ..if they are brave enough to make friends, with other kids that are really chatty and outgoing.

Taking them to activities outside of school will help, joining clubs where there are no children or adults from her school there. It's like starting afresh for them and with luck they may have the confidence to speak, even quietly, in new surroundings.

We will be sending her to a secondary school with hopefully no other kids from her class there, this is what she wants as well. She thrived in summer camp when she met a chatty kid that she'd never seen before and there were no kids from her class there. She went on to a second camp during the summer which she had been going to for years and never spoke, the same chatty kid was there too by coincidence and lo and behold she started talking to her, joking about etc.

It's hard to get of the route of why a child stops talking, sometimes it's just the way they are, part of their personality. It's nothing a parent has done wrong kids from all walks of life can suffer from selective mutism.

My daughters was triggered when she entered the school system, before that she was quiet by nature, like her dad, but still chatty and would crack jokes. But she always took more to adults than other kids because that's just the way she was reared, she has no siblings or younger cousins.

She used to go to school all tense, her little shoulders would be hunched and she would stand in the playground and just freeze on the spot. If someone tried to talk to her her face would just draw a blank. It can be mistaken for shyness, or a child being defiant but this is not the case at all.

She is in no way shy and a well rounded little person, it's an anxiety a phobia of certain social situations.

What would be great would be for parents and their kids with sm to meet up in one big group but trying to round everyone up can be difficult there is no offical support group out there.

Sorry for the long post but thought some parents might be able to compare snippets from my post and see if their kids have had similar experiences.

Alice1

Hi Sigma force,
Good to hear from you. It is great that your DD is whispering - hopefully she will talk to adults in time. A secondary school where she is not known is a good idea - sometimes SM children get known for being "the one who doesn't speak" and that is what defines them to others.

My DD was quiet-ish but it was only in school that it was noticed that she didn't actually speak. Following treatment, she has improved immensely. And I quite agree that it is a confidence thing.

Incidentally, I did reply to Sousou's post by PM - I didn't ignore it although it looks that way!

We got a lot of support from the HSE and I am sorry to hear that it wasn't the same for you.

Motley Crue

Selective Mutism is a behaviour. Unless the mutism means the child has an underlying speech or language delay/disorder a Speech and Language Therapist would not be involved.

Alice1

I agree. We did not see a speech therapist nor was one even mentioned to us.

Sigma Force

Neither did we, it was a physcologist (sp?) we were involved with. Her speech and language is perfect and always has been. Pretty much a 'by the book' kid from day 1.

Sigma Force

How are everyone elses kids doing at the moment?

We had another breakthrough, I guess you could call it a breakthrough or perhaps more of a confirmation. A relative that my daughter hasn't seen in a long time, would barely remember tbh so she had no clear memory of wether she ever talked to him or not so it was basically to her a clean slate she had a choice to either speak or not, I said nothing just mentioned he was visiting.

At first she was going about doing her own thing then came into the room and we were all waffling away. She then started to interrupt the conversation, now normally that can drive parents bonkers but I was delighted lol.
It could be perhaps because he didn't make a fuss just said hi and then was just chatting to us and said nothing to her which helped.
We're all a bit Nintendo mad so we were all talking about her favourite subject and she just started butting in all the time, it was brilliant.

Now I have to admit I made a stupid mistake, because she generally doesn't answer people I tend to answer for her at this stage I've been doing it so long I sometimes leave a pause to give her a chance but sometimes out of habit I just answer and this time I stupidy answered questions that were directed towards her so she didn't get a chance to speak to him directly.
Was kicking myself afterwards when I realised what I'd done.
I know better for next time.

But anyway it's a good thing all round she was so comfortable and chatty, we'll be up to visit to our rellies more often so hopefully that will help.

So it seems to me that her selective mutism is now restricted to school, to people from school ie if she bumps into them outside of school times and possible the odd relative that she remembers not speaking to before.

Her confidence has grown and I think her sm has improved also due to just maturity.

I know kids should never talk to strangers but these are about the only people my dd will speak to lol obviously keeping them not so much strangers but relatives and friends your child hasn't seen in a long time or doesn't remember might help.

She's started to brave paying for stuff in shops now but the next trick will be to try and get her to say 'thank you' when she gets her change..that'll be a tough one.

sousou

hi all....havent been on for a while, hope all is well!!!!!

hi sigma force. thats great,so happy for you and mostly for ur daughter its a HUGE step for her. my daughter is much the same ,she will talk in most situations outside ,but school is the hardest for her or if we see someone from school when out she cant talk,and cant talk to my family or my husbands ,only my sister and mother. she will now whisper to me in resource while the resource teacher is there ,although this is great we seem to be at a stop , and im finding it hard in knowing what to do nxt.we have a physcologist that is not much help.

LizT

Motley Crue wrote: »

Selective Mutism is a behaviour. Unless the mutism means the child has an underlying speech or language delay/disorder a Speech and Language Therapist would not be involved.

Are you sure about this? The american speech-language hearing association found that speech and language therapist are actually the best placed to be working with children with selective mutism. I would have thought there would be some intervention from SLTs?

I only ask because I'm currently studying SLT and from what we have learned about selective mutism, I was under the impression (from reading CQ3) that a speech and language therapist would be involved even if the child did not have an underlying speech delay/disorder - I'm probably wrong though...

sousou

hi lizt, i agree with you on this, from everything ive looked up, all the children have slt, when i asked for this i was told that because my dd speech is fine that she doesnt need it. in america and england the children all seem to have slt, with or without speech problems,. so i think they should be involved, i will just keep pushing till i get the right care for my dd

LizT

sousou wrote: »

hi lizt, i agree with you on this, from everything ive looked up, all the children have slt, when i asked for this i was told that because my dd speech is fine that she doesnt need it. in america and england the children all seem to have slt, with or without speech problems,. so i think they should be involved, i will just keep pushing till i get the right care for my dd

That's probably it - I'm studying in the UK so maybe the policies are different in Ireland!

jkforde

thought this might be of interest..

http://mindhacks.com/2010/11/20/i-stopped-talking-when-i-was-six-years-old/

(the www.mindhacks.com blog is excellent by the way)

puzzledperson

Hi, I'm new to boards and came accross your conversation. I'm an adult with selective mutism. I only found out in the last year what was wrong with me. I had extreme problems as a child and was always pushed aside and ignored and learned to accept that. I could take all night to go into details but thats not why i'm contacting you. A recent problem brought everything back to me and i found myself in the same paralysed state that I was in as a child. I wish I had all the answers you need but I don't, however if there is anything I can help with I will from an insiders point of view. One thing I am sure of is extreme anxiety and frustration leads to the mutism and not the other way around. Perhaps you have already looked up - social anxiety/ phobia and are familiar that there is a link, I'm not sure. If not maybe this will be of some help. I've flicked through the few conversations above, one of you mentioned that your child will only speak to strangers - My feeling would be that they have no expectations of her, others have already to some degree decided that they aren't going to get anywhere and so don't bother, give up too soon or intimidate her somehow. The other of you mentioned that your daughter will only whisper to you when the classroon assistant askes a question, my feeling would be that she likes the assistant and is afraid she might push her away. you comunicate well with the assistant so shes getting you to keep it up. I'm not qualified professionally in any way so this is purely my opinion. I wonder if perhaps the assistant might gain her confidence by suggesting a game. A non verbal game - introduce it slowly (everything will always have to be done slowly or will have major set backs) maybe continue as you are but throw in the occasional question that has a yes or no answer, if she can't answer verbally ask her to put her hand on the assistants (assistant will have to have her hand beside you childs on the table from the beginning - look very pleased if she does it but don't make too much of it )very important.. I can only say this is an extremely debilitating condition and self esteem is unbelievably low. Please beware that your child has extra sensory perception. Every thing you do or say is translated to her in a different way than you might expect. I'm sorry i'm not articulate enough to explain, but please don't ever discuss her in front of her. Don't entertain conversations on the street or wide eye glares instead - shes not blind. For my part at least, I was answering all the questions in my head, I just couldn't speek. I don't know if this is of any help, or if you have any questions. If so, I'll do my best to answers them and if not best wishes.

Alice1

Hello Puzzledperson,
You are very welcome. I have never spoken to an adult who has Selective Mutism and have read your post with great interest. It is so difficult to find information about the condition.

My daughter has SM and has had treatment which was successful in that she now speaks to almost everybody. She has grown in confidence too. When she moves up a class I make a point of seeing the teacher as early as possible and telling them that she has an anxiety disorder. So far, I have to say the teachers have been super. But last year, when she moved to a new class, the teacher said "Oh I thought she had been cured" I had to explain to her that it is a disorder not a disease!

I have a million questions - but can't seem to find the right words. Would it be alright if I came back to you?

Thanks again for posting.
Ali

Sigma Force

Found the post interesting too, it's good to hear an adults experience because sometimes it's hard for kids to explain or they don't want to talk about it. So to be able to learn more is great it helps us understand what might be going on in their wee heads.

zoviea

Hi, I am just wondering if anyone could give me advice on selective mutism? My child is 10 and also dyslexic but we as parents feel there's something else wrong. Seems to have all the symptoms of selective mutism but is this a late stage for diagnosis in regards treatment.. Like heading to secondary school in 2 years and we are only realising this now. Will there be enough time for treatment? And do you have to wait a long time for an assessment? Sorry for all the questions.. Feeling bad that I didn't get this done sooner and not keep thinking this is just her personality.

Alice1

Hi Zoviea
I would suggest going to the doctor as your first step. My daughter's assessment was done through the school (ie they arranged it) so maybe talk to the teacher too.

It is a bit scary and frightening but you do need to know. Ten is not too late for treatment, but it is a bit surprising that the school didn't pick up on it before now.

Let us know how you get on.

zoviea

Thanks for reply. The school has missed dyslexic with her too!! We went and done that assessment ourselves as we knew something was wrong. Maybe we are working about nothing.. Would it be very obvious to see in a child?

Alice1

Yes, Selective Mutism is very obvious indeed because the child does not speak! My daughter was eight years old before my own mother heard the child's voice. She simply could not speak if my Mam was there - or indeed anyone outside of our own family.

Doctors are very loath to diagnose Selective Mutism however, it is important that it is followed up.

zoviea

That is just it though, she speaks in our home or with family but very little in school. Her friends are surprised when they come to our house as she talks so much but her anxiety is just the worst. She still needs me to stay with her at night until she is asleep and stresses over everything.
Any advice on a getting my child assessed ..Will the HSE take months? If so I will go private, but what am I looking for regarding the assessment.? Thank

Alice1

As far as I know, your doctor can arrange a psychological assessment. Ours was arranged by the school.

In our case, my husband and I met the team (separately) and then they came to the school to observe our daughter (very discreetly). They also met with the teacher. One lady came to our house and played in the playroom with my daughter - she was lovely. She came a couple of times and then we went to the centre. My daughter was taught coping strategies. She will always have the anxiety disorder but now, she copes better than before

It can take time and patience is vital. I would urge you to get an assessment done as soon as possible so you know what you are dealing with.

zoviea

thank you your reply Alice1. Was it the school noticed it for you? And if you don't mind me asking, did your child talk at all in school? Mine talk only to a select group of friends but not unless she has to with other people or teachers/Glad your daughter is doing well. It is so hard to see them stressing. I cant wait to get the assessment done also, if I don't get an appointment in January through the HSE ill go private. Spoke to them today and you get an appointment straight away so im happy with that. Seems to take a while for a diagnoses by what you are saying so im in for a wait there!

Alice1

Yes, the school noticed because she did not speak to the teacher - at all. I hope you get an appointment soon, so you know what is going on. Best of luck and let me know how you get on.

mariefahy

I am a senior speech and language therapist with 17 years experience specialising in child and adolescent mental health. The moment you notice your child is not speaking in school, refer immediately to primary care psychogist or a child and adolescent mental health service via your GP ( lucena for south county Dublin and Wicklow or dublin north city and county,james joyce st for north county Dublin. West Dublin and Kildare are serviced by linn dara CAMHS, Ballyfermot..

Speech and language therapists are best placed to treat selective mutism by setting up programs in your child's school. Speech and language work with resource teachers to break communication goals into small steps. This takes a long time, on average 18 months. The earlier you refer to CAMHS the better so don't delay

mariefahy

Also please Check out selective mutism Ireland, a parent support set up 2 weeks ago, SMIRA Facebook page for parent support and resourced and Maggie Johnson, SLT in Kent for training and conferences. I hear that Maggie Johnson is coming to Ireland in Sep 2017 so make sure to book your place...in Monaghan & Dublin. Excellent irish Times article by John Sharry, author of Parents plus & social worker- Sep 2016. Hope this helps

zoviea

mariefahy wrote: »

I am a senior speech and language therapist with 17 years experience specialising in child and adolescent mental health. The moment you notice your child is not speaking in school, refer immediately to primary care psychogist or a child and adolescent mental health service via your GP ( lucena for south county Dublin and Wicklow or dublin north city and county,james joyce st for north county Dublin. West Dublin and Kildare are serviced by linn dara CAMHS, Ballyfermot..

Speech and language therapists are best placed to treat selective mutism by setting up programs in your child's school. Speech and language work with resource teachers to break communication goals into small steps. This takes a long time, on average 18 months. The earlier you refer to CAMHS the better so don't delay

Hi. Thank you for your reply. I did try to get her seen by CAHMS referred by doctor but she's not "bad" enough. Makes me angry because if you wait until she's worse then they will be no help😑. So is on the psychologist waiting list but can take up to 2 years!!!
So hoping to get an assessment of needs done and maybe get some help this way..I just feel lost and poor children don't have the help that's needed.

Alice1

Zoviea, who said she is not "bad enough"? Did the doctor refuse to refer your DD? This is not going to be an easy road and you will need to fight for every little thing. But don't give up - you will get there.

zoviea

Alice1 wrote: »

Zoviea, who said she is not "bad enough"? Did the doctor refuse to refer your DD? This is not going to be an easy road and you will need to fight for every little thing. But don't give up - you will get there.

Hi, it was the doctor from CAHMS that said she was not bad enough..Im figuring that this is going to be a hard long road..but I will fight for my child. I also have sent in a referral for AON assesment of needs..I've heard there is a long waiting list here too.😕