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How much help for selective mutism? Should I be asking for a statement?

(8 Posts)
pannetone Sun 30-Sep-12 23:01:47

Background - DD is 7.5. She was diagnosed with selective mutism at age 4 whilst still at pre school. She has had assessments from NHS speech therapy and advice was given to her reception teacher but no therapy. I tried to use the 'sliding in ' technique without success. In years 1 and 2 DD has had a weekly sesssion with the independent SALT employed by the school. She has made some progress in that with the support of the SALT she has spoken to the majority of children in the class. However, this has not generalized to the classroom the rest of the time. DD only spoke to her teacher when the rest of the class were out of the room.She would sometimes read in her group. Now in Year 3 the SALT input is every other week. In year 2 the TA did 2 x 15 minutes sessions with DD in a group on the week without the SALT input - I haven't been told this is continuing this year.

Bit of a 'how long is a piece of string' question, but should I be pushing for DD to get more help and a more structured programme towards speaking in class? She has undoubtedly made some progress (reads occasionally, will sometimes speak to friends in class if they are in a small group working together) but there is still so much she can't do - answer a question, share her ideas, answer the register, ask for help etc. DD is progressing academically but I do think the lack of speech is holding her back from achieving her potential - and I think that this will be an increasing problem as she gets older.

I don't know how much support the School should be providing her from within their budget - she is on School Action Plus. I don't really understand about statements - can she only get one once the school have shown they have done all they can within their budget to support her? Do I have to push the School first before I can think about applying for a statement. Will a request for SA just be refused if the view is that the school should be doing more?

DD now has CAMHS involvement too - and after the CAMHS psychologist observing DD on Tuesday, I have a meeting with her, the SALT and the SENCO and I want to be clearer what I should be asking for. DD is also undergoing assessment for ASD - but they didn't manage to do the ADOS test last month because of the selective mutim and they seem unsure if they can adapt it appropriately - in which case I have been told they will leave it at the moment. I don't know if that satisfactory either...

wasuup3000 Sun 30-Sep-12 23:51:18

It is difficult to get a statement for selective mutism. It is useful to have something alongside it. CAMHS answer is not good enough and you can ask for a 2nd opinion on that and to be reffered elsewhere. If your speech and language therapist has suggested a programme such as sliding in for the selective mutism then school would now be expected to provide this under a new discrimination law add on that came in at the beggining of September.

wasuup3000 Mon 01-Oct-12 00:31:18

Sorry I missed the bit about sliding in, in your post - but the same formula would apply to sliding other children in one at a time untils she can speak comfortably in a small group.

Naelith Mon 01-Oct-12 09:03:09

Hi

I havent posted on here before but my DD is selective mute too and she has recently been diagnosed as having ASD and anxiety disorder alng with a few other bits smile

My DD hasnt spoken to here CAMHS worker once but it hasnt stopped the diagnosis, she didnt have an ADOS as they couldnt do it properly due to her SM. The only way we got round this was a complete multidisaplinary assesment. She saw OT, SALT and CAMHS and we did a 3di instead of the ADOS.

The assessments all picked up signs of ASD so they have said that as she presents ASD that is what they will call it. If it needs to be changed as she gets older they can do this.

I would push for an answer, I had to and it has helped tremendously. My DD is now medicated for the anxiety and it seems to be helping with the SM a little.

As for a statement I applied for one for DD and they refused assesment so I appealed and won. They then issued a note in leiu, I appealed and won. (I did these appeals while appealing a school placement for my DS and won that as well so im on the nasty parent list at my LA)

DD now has a statement which lol I am appealing because its rubbish as the LA dont beleive that she has selective mutism and wont put any help for it in her statement. But it can be done it just may mean a lot of appeals to go though. Also I had to get independant reports as the LA refused to let my daughter see OT and SALT so these I had to get myself.

I hope that helps smile

pannetone Mon 01-Oct-12 18:37:40

Thank you wassup and Naelith. You both seem to be in agreement that the ASD assessment should take place by them finding ways around DD's selective mutism.

Thank you wassup for the info about the new provision under the Equality Act against discrimination. That's the provision relating to auxiliary aids and services that came into force in Sep, isn't it? I knew about that bcause I have a disability discrimination case against my DS's school - that provision wasn't in force then though. Didn't think of it in relation to DD. Not sure what you meant when you said it was difficult to get a statement for SM but it is useful 'to have something alongside it'.

Thank you for sharing your experiences Naelith. How old is your DD and when did she get her ASD diagnosis? Full credit to you for finally getting a statement - though it's awful that after all that it still doesn't yet provide appopriate help. Are you confident that you can get the statement 'improved'? Would you recommend going for a statement?!! And would my chances be reduced as DD is academically a bit above average - apart from communication and social skills of course!

wasuup3000 Tue 02-Oct-12 00:11:59

It is useful to have another difficulty alongside SM - such as ASD/ or a learning difficulty when applying for a statement as for just SM on its own it is really hard to get. Roughly whereabouts are you in the UK message me if you like I know of one CAMHS service that treats SM and has adivised other CAMHS services.

Naelith Tue 02-Oct-12 23:24:22

Hi

Sorry I didnt get back sooner. My DD is 11 know, she was diagnosed last year at age 10. I had been trying to get her diagnosed since she was 5 as she never spoke at all at school before she was 8 but everyone here kept saying she was just extremely shy. Also they said she was copying her brother so wasnt ASD at first too. It wasnt until I saw a differant psychiatrist for a second opinion last year that she was finally recognised as having difficulties in her own right.

I am confidant that I can get the statement improved, the LA tried to say she didnt have selective mutism at the last tribunal and got ripped apart for it as their SALT has never seen her but was telling LA she doesnt have SM. they are still using the same argument and still havent got SALT in to see her so they will probably get a telling off again.

My DD is above average inteligence but because of school refusal caused by her anxiety wasnt accessing the curriculum so they couldnt really argue with me, also when she was in school she was spending up to 2 hours curled in a ball in a corner not moving or speaking due to sensory processing difficulties and her anxiety.

My only advice would be go with your gut instinct. I knew my dughter wasnt coping and I new there were other problems that were being ignored (must say here that at time of applying for the statement she had no diagnosis, the diagnosis was made after the statutory assesment)

Hope that helps

pannetone Sat 06-Oct-12 23:12:08

Thank you again wasuup and Naelith. Will PM you wasuup with my location.

I had the meeting with the CAMHS psychologist, independent SALT employed by the school, SENCO and class TA. Didn't mention above that the school have just given an individual DD art therapy session each week - she has had 2 - and I have also met with the therapist. (She couldn't be at the main meeting)

When CAMHS lady heard about the school speech therapy and art therapy she said she thought DD had a 'good support package' and didn't say that CAMHS would/could provide anything more. The SALT and SENCO think DD is making progress in relation to her SM. The SALT is aiming to get DD to speak(within a small group with TA support) to more than half the class in turn. She thinks this will be the 'tipping point' to enable DD to speak in the classroom. The 'plan' will be introduced to the class by the SALT as a 'project' to enable DD to be comfortable speaking and involves visual 'rewards' for the children as they complete their turn doing the group activity with DD.

I need to clarify with the SALT and school the timescale for this 'intervention' - particularly how often the TA will do the group sessions.I think they will be twice a week for 15 minutes. And there needs to be a clear target for it - so we can see if it's met!

I'm not sure of the role of the art therapist who told me she hadn't dealt with SM before. But the SALT welcomed her involvement and is going to speak to her.

So i'm feeling that strategies are being put in place this term. Hopefully they will give DD enough help to make progress. Fortunately,after a worrying time late last year, DD is going into school OK and anxiety isn't stopping her from doing the work.I will continue to push for the ASD assessment - I am waiting for another appointment after one had to be cancelled.

Thanks again.

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