Selective Mutism

[BellyBelly]

I could just cry this afternoon. After being told by two pre-school teachers that Marisa might have this, I looked it up and you know when something all of a sudden makes sense and explains everything to you that you have been going through? I feel such a huge relief I just want to cry.

I was probably ignorant at first, I thought she would grow out of this 'shyness' but selective mutism is apparently a childhood anxiety disorder, which makes sense... apparently it's an inherited thing anxiety genes and my grandmother confided in me that when she was younger she would have panic attacks. I am a very anxious person but have only ever had one panic attack in the mother and baby unit - but poor Marisa.

The symptoms are everything I am going through, from poor sleeping, poor separation especially when younger (ooooh boy lets not go there) and the main thing is only talking when with family but not in public or schools etc - anywhere on 'display' so to speak. Her kinder teacher told me today that she is so smart, she's figured out a way to communicate without having to talk. So it's gotten that bad. This too is another thing, it's often a thing intelligent and articulate children have - she is both of these things. The irony is, and as per what normally happens, they talk their heads off in private with family, can be boisterous etc... that's Marisa!

Gosh, I think I need a big cry now and I can't wait until John gets home to show him what I have found. We'll start cognitive behavioural therapy as soon as we can, it can get worse the longer it's left and be terrible for self-esteem and development. I just need to find the best child psych I can... god I feel so awful but relieved at the same time. Who would have thought a simple name of a condition would bring such relief...

[hannanat]

My 4yr old daughter has autism and it was such a relief to be diagnosed so that we can finally begin to fight it. We've declared war on her autism and look at it is a fortress around my baby keeping her locked away from us. When you know what the problem is, thats when you can start to beat it. Good on you and congratulations, because the hard part is over. Its only up from here!

[BellyBelly]

That's exactly how I feel Rayla - I only wish I did something sooner. I am worried about finding the right person to treat her though, how did you go about it? I have been checking out the Psychology Association website this arvo.

[Trillian]

The poor little thing Kelly. But like Rayla said - now you know what it is, things can only get better as you and John can now understand her a lot better IYKWIM? And you can now get her some help for it. it may be a struggle at times but I know you are a strong woman and you will do everyting you can to help Marisa.

Good luck Kelly.

[BellyBelly]

Awww thanks hon! I know it's going to be okay. I feel so weird that I am on meds and from what I have read, 70% of children on them respond very quickly and they can recommend them in conjunction with CBT. Argh. I dont like the idea of my little girl on meds

[hannanat]

I read every single letter of info that was available, because with any condition that has psychologists attached to it, there are always many differing opinions, but the best thing you can do is to talk to other parents with the same problems. There is a lot of help out there with a lot of lovely people that genuinely want to help, but unless you are very lucky you will have to find most of it yourself, so other parents that have travelled that road before you will be your best bet. We absolutely refuse to believe that our daughter can't beat autism, which is a different sort of communication disorder, and she is very slowly, but surely making improvements. Every step is a fight, but its a victory and we cherish it more for it being harder won.

[Astrolady]

As Kelly knows I think that Kameron may too suffer from selective mutism, as like her reading their website I was sitting there saying OMG that is so Kameron, and I showed the link to my mum who said "that is exactly what you were like"

I have printed off fact sheets for Kamerons teachers at Kindy, to see if they can help me with getting a professional opinion if he is/isn't. They are already concerned about him and have spoken to be before about his refusal to talk to them.

Love

[iris]

Kelly sorry to hear that Marisa is going through this.

One thing that I have always said is that the unknown is worse than knowing. Its a weird place to be, because one part of you is devastated by the dx, but the other part is completely relieved that there is an answer to all the worries. Just being able to finally do something, instead of thinking what the hell am I suppose to do to fix this!

It is a horrible thing to have to see your child take meds. But I will also say that when you see the improvements it is also a relief and it makes it a little easier.

Like Rayla said talking to other parents is a good thing. I found that its not just the picking up hints here and there from them, I found that knowing that their were parents out there that could completely understand what your going through the biggest help. And like Rayla, one of the best things to do is believe that it can be beaten. Some may say its false hope, but knowing that they will find a cure for CF is the only thing that keeps me sane.

I hope you have luck in finding someone fantastic to treat Marisa.

[BellyBelly]

Thanks so much guys, it means so much to me and I feel silly that in comparison, its not something serious or life threatening. I told John and feel completely deflated as he went on about labelling kids with stuff and seemed really blaze about the whole thing, so I feel a bit knocked for six, I was hoping for his support more. But like I said to him, I have been parenting Marisa full-time for the last four years so I know what it's been like and have seen this in action alot more than he has - i'll still persue it as I think it will be a huge help. She's so quiet around others that it builds up and gets let out at me, in that she will talk and talk without stopping for breath LOL!!! I can't think for myself sometimes!

[visitor2]

Kelly i am pleased that you have found information on this and now you will be able to help Marisa.

Thank you also for posting about this as i have the same problem with Kimberley she can talk around people she knows but as soon as someone else asks her something she doesn't say a word. Sometimes i get embassed when someone asks her what her name is and she just looks at them.

[Melbo]

Kelly - It's good they've worked this out now and there's a plan of action for you and Marisa. Maybe as you say, you're with Marisa all the time so you've seen her responses more than John has which is why he doesn't seem particularly worried about it. He also probably doesn't want to worry you much more by getting upset about it either. Good luck with everything and I hope you find a lovely psychologist ... I'm sure you will.

[BellyBelly]

Thanks again guys I thinkhe was actually shocked, he took her out for a walk and when he came back, told me he couldn't stop thinking about it and felt very upset about it, as what he had read sunk in.

I hope that this is all rectified by the time she is in primary school, which is not next year but the year after (so glad I held her back - due to shyness LOL) but I know what you mean Jill and funnily enough people have told me from infancy that she will grow out of it and it's a phase!! So I know they are wrong already because it's been 4 years.

I have tried every sort of class to try and get her more socialised, she did Gymbaroo from a young age and ballet twice, music lessons etc but wont talk to anyone or follow instructions. It was as if she would freeze and not know what to do - which is a symptom. It's not that they are not intelligent but in a state of anxiety and fear. She does immerse herself in arty and intellectual sort of things, which I guess is a result of the mutism, but the scariest thing is that I remember feeling all this stuff - they say it's inherited - well I always put it down to moving schools every single year as a child, but I would never do much with the kids and teachers would always ring mum. I never had friends I could attach to and was the intellectual one in the family too - I am the only one who even completed highschool!!! But so much is making more sense now - I only wish I knew sooner.

All I can do at home is not make speaking a big deal, or expect her to answer anyone (as I would get anxious with alot!) and not 'wait' for her in anticipation to talk around others - which just makes her anxiety worse. So hopefully it will get better soon!

Thanks for all your support guys, BellyBelly members rock

[MistyFying]

Kelly ~ sorry to hear you're facing this with your little girl. I totally understand the spectrum of feelings and reactions you're having (the relief mixed with the sadness etc). My DD has something different... a speech language delay. We got onto it early and she's progressing well. We, too, had a lot of people say, "You've never met a 20 year old who can't talk" etc, but early intervention in her case was what was needed.

You asked how you go about finding the right professionals to treat her. Well, I found it's best to talk to other parents in the same situation as you (maybe find a support group locally?) and then ask them who the best professionals are. I also gathered info from my paediatrician and other health professionals and made a choice from there. Perhaps those teachers who noticed it and mentioned it to you also know of professionals who have had success?

Good luck Kelly. Marisa is lucky to have a Mum like you who is willing and able to help her work through this.

[MaryP]

Hi,

We too have a little girl (4 yrs) that has been recently diagnosed with SM. She also has verbal dyspraxia (a speech disorder). Like Kelly and her family, we too have only recently fully understood this disorder and its effects.

When looking for a therapist, ask your paediatrician, GP, hospitals (RCH), psychologists. Even though my daughter is not yet at school, we asked the principal at my son's school if she had any ideas. Just be wary of any biases (even unintentional) that someone may have. For example, my daughter's paediatrician immediately recommended the speech therapist in her practice. I'm sure this therapist is good, but is she really the right therapist (with the appropriate expertise in selective mutism), or is she just the first one to come to mind. After talking to her, I felt that she really didn't have a lot of experience with treating this type of condition. I was just a little disappointed in my paed - I was hoping she would be able to put me onto a specialist in the field.

As far as medications are concerned, I get the feeling that they aren't used as much here in Australia as they are in the U.S. to treat this condition. I could be completely wrong on this. If meds are recommended to us, we will just have to weigh up the pros against the cons. I see the potential social isolation my daughter may face in school as a major con, and therefore we would seriously consider this option if it presents itself. Firstly, though, I'd like to look at all other non-drug approaches.

Hope this helps!!

[Tigergirl1980]

Kel was any of that info useful to you? I hope so If you need any more info from my friend let me know too, he said to let him know.

[Sandy_K]

Hi All,

I read the articles from Kelly and Mary. Its sad to know your child has be suffering from SM.My son(4 yrs) also displays the same characteristics of the SM disorder.He goes very quiet in places where more people are there.He becomes quiet rigid and won't be comfortable. I am in search of the therapist. And would like to give him CBT.Can someone help.I am based in Melbourne.Please its a cry for help.I just feel so upset about this..!!!

please help.

Thanks
Sandy

[monnie]

Hi all

I'm a Speech Pathologist who works in the field of child and adolescent mental health

I can't talk from the perspective of a parent with a child with difficulties, but I can talk from a professionals perspective.

There are so many professionals out there...but what is really important is finding a specialist in the field. There's lots of professionals who are generalists (which is great for lots of areas of difficulties) but for very specific disorders (e.g. SM, Autism, dyspraxia, etc.), you need to find someone with experience and specialist knowledge.

Don't be afraid to ask the therapist about their experience with your child's specific difficulties. Ask them what their understanding of the disorder is. Ask them whether they liase with other professionals/schools.

Arm yourself with information. Information about the disorder, treatment options, etc. and don't be scared to ask questions of the therapist.

Don't overlook government services. Some of them have some of the most experienced professionals in the field.

If you are going private and are not sure who to choose, contact the national association for that field (e.g. Speech Pathology Australia, Occupational Therapy Australia, Australian Psychological Association). Alot of them have websites or at least links to private therapy websites.

The other thing to do in finding the right private therapist, is to contact your 'premier' government service in your state (e.g. in WA that would probably be the State Child Development Centre). Ask to speak to the senior therapist in the profession you need and then ask them who they might recommend as a private therapist. It's at least worth a try!

Another thing to think about is joining a parent advocacy/support group. Ask around about what there is. Often this is a place of great support and information...and word of mouth recommendations.

One last thing...one of the most important things about therapy is the relationship between the therapist and your child. Monitor how it's going. If after 5 or so sessions, you are really feeling that it's not working, don't be afraid to talk about this...or even consider looking for another therapist...obviously you want to talk about this with the therapist...but once you're with someone, it doesn't mean you have to stay with them.

Anyway...I hope that helps!

All the best...

[MaryP]

Hi Sandy,

Just noticed your post. We have found a therapist with experience in SM and she is very good. We have been seeing her privately in North Melbourne since April this year (fortnightly) and Chloe has made tremendous strides. She is now comfortable to communicate to her friends at kinder and doesn't mind being overheard by the kinder teachers, but she still freezes up if a direct question is asked of her by the teachers (they only do this sparingly). The lovely thing is, she is such a happy little girl at kinder now - she participates fully in all activities and has made a few good girlfriends. She is no longer clinging to me when I drop her off. She has spoken a few words/sentences to her teacher during home visits, but this speaking has not transferred over to the kinder. Anyhow, please feel free to email me gnm123@bigpond.net.au directly if you would like to discuss further. I can tell you more about our therapist.

Cheers, Mary