Selective Mutism - any advice?

Well, frankly, it's just not good enough for the school to say they don't have the time/resources to devote to this - school governing bodies are under very strict legal duties to ensure the special educational needs of the children at the school are met.  If they need more resources, they should be applying for an assessment themselves and/or calling in help from LA/specialist services/NHS and so on.  Having said all that, my daughter's primary school didn't devote anything like as much time/resource as they could and, by the time she got a statement in year 6, transition was too near to make any significant improvement before secondary transfer.  Secondary school have been fantastic however - they don't let NHS/LA off the hook with vague advice/insufficient support; the 'associate SENCO' is going on the two Johnson/Wintgens SM courses being run at UCL in March/April and they're fully supportive of me getting as much external help as possible to assist with putting in a programme of support.  It should have all happened years ago and their job has been made much more difficult as a result, but at least they are doing what they can now.

On the referral to GOSH - that was for the autism assessment (no I'm not local - on Essex/Suffolk borders). The local paediatrician said she couldn't do the 'normal' Autism assessment on a child who didn't speak, so referred for specialist assessment.  It was the child development clinic at GOSH - a multi-disciplinary team with paediatricans, SLTs and clinical psychologists all working together.  They were fantastic - unfortunately, the only fantastic experience I've had from the NHS.  I got shoved from pillar to post locally between CAMHS and SLT services - might as well have phoned the Samaritans for all the useful support they provided until I gave them no choice with tribunal proceedings.   Even then, the supposed 'unlimited' weekly 1.5 hours input from the SLT is going to end after 12 weeks, with the school insisting she keeps up regular visits to monitor progress and me facing the prospect of enforcement action against the LA if they don't deliver on statemented provision. 

Does your daughter have autism and selective mutism?  If both, then that's going to complicate the SM intervention I would have thought.  'Aspergirls' by Rudi Simone has a chapter devoted to mutism and puberty - spectrum girls and mutism do seem to go together...

If I were you (and I was you when my daughter was in year 4 - so do learn by my mistakes!), I'd:

1.  Get on IPSEA's website, download the template 'Request for Assessment' letter and bash it off without delay.  In the meantime (if you have resources - this all costs - heaven knows what families do who have no cash to spare...); research SLTs or other professionals with SM and (if relevant) autism experience and have your daugther assessed, with a view to getting a tribunal-friendly expert report setting out recommendations for provision/intervention. 

2.  Even if the LA concedes a statutory assessment, when it comes to specifying provision in a statement, they will be vague to the point where you'll have nothing to enforce - so your private report will come in handy at that stage.  It will also come in handy when haranguing the school for more action.

3.  I got fobbed off for far too long with the kind of vague 'help' at school that it sounds like your daughter is getting.  For entrenched SM, they need to look at the chapters in the SM manual that set out what a structured programme of intervention looks like and be asked what their plans are for putting something in place that is regularly monitored. 

4.  Nag the NHS SLT services for something more structured.  I got so fed up with our local services that I ended up complaining - it's a disgrace really - there's a manual out there telling everyone how to do it properly and no one is prepared to give schools the support they need with these more complex cases. 

5.  Try and involve the Ed Psych service - SM intervention is a behavioural intervention and, in my daughter's statement, CBT is recommended to reduce anxiety.  Typically, the LA did nothing about making provision and primary school were happy to sit on their hands.  Big school, yet again, were having none of it - they nagged the LA about it and the Ed Psych eventually offered a trainee Ed Psych as a weekly resource.  She's great and did a very good report for my daughter's recent annual review, with weekly therapy sessions recommended after school.  With her on board and a very keen associate SENCO fully committed, I suspect this will end up supplementing (or supplanting) whatever the SLT comes up with in the way of a SM package.

6.  The most frustrating thing is how long everything takes.  That's why I'd get your request in pronto, expect it to be turned down, expect to appeal and, in the meantime, you can be getting on with preparing evidence, nagging the school to do more (I gave secondary school a copy of the SM resource manual - they said they've turned to that much more often than anything the NHS SLT has given them).  You could ask the school to come up with a plan for a structured intervention programme pending your request for assessment.  If they say they don't have the resource, you could ask for the issue to be referred to the Governing Body because it's not on that some schools just don't do anything without being constantly nagged.  Obviously, you've got a relationship to maintain with them but it does get to the point where you've got nothing to lose really...  If nothing else, they should be supportive of your request for assessment, I would have thought.

I thank my lucky stars my daughter is at the school she is now but, as may be just a little bit too apparent from what I say above, it just serves to annoy me even more about the shoddy efforts I've had to put up with to date.  Trouble is, you get so used to no one doing anything, that becomes your new 'normal' and I've only recently stopped apologising to Big School every time I contact them - I'm never made to feel a nuisance - on the contrary, they've been at pains to tell me it's very helpful to have parental support/insight and nothing (yet...) has been too much trouble.  The whole feel is just much more professional and business-like.  It's just a pity that, with so little progress made in primary years, the problem is more difficult to tackle now.  But we are where we are with it - and at least my daughter's a generally chipper little thing in her own (very) quiet way.  Or very noisy way, if we're talking about home time...

Anyway - do let me know how you get on - I've made every mistake in the book and will be only too pleased to help anyone else avoid just one of them...!

Well, frankly, it's just not good enough for the school to say they don't have the time/resources to devote to this - school governing bodies are under very strict legal duties to ensure the special educational needs of the children at the school are met.  If they need more resources, they should be applying for an assessment themselves and/or calling in help from LA/specialist services/NHS and so on.  Having said all that, my daughter's primary school didn't devote anything like as much time/resource as they could and, by the time she got a statement in year 6, transition was too near to make any significant improvement before secondary transfer.  Secondary school have been fantastic however - they don't let NHS/LA off the hook with vague advice/insufficient support; the 'associate SENCO' is going on the two Johnson/Wintgens SM courses being run at UCL in March/April and they're fully supportive of me getting as much external help as possible to assist with putting in a programme of support.  It should have all happened years ago and their job has been made much more difficult as a result, but at least they are doing what they can now.

On the referral to GOSH - that was for the autism assessment (no I'm not local - on Essex/Suffolk borders). The local paediatrician said she couldn't do the 'normal' Autism assessment on a child who didn't speak, so referred for specialist assessment.  It was the child development clinic at GOSH - a multi-disciplinary team with paediatricans, SLTs and clinical psychologists all working together.  They were fantastic - unfortunately, the only fantastic experience I've had from the NHS.  I got shoved from pillar to post locally between CAMHS and SLT services - might as well have phoned the Samaritans for all the useful support they provided until I gave them no choice with tribunal proceedings.   Even then, the supposed 'unlimited' weekly 1.5 hours input from the SLT is going to end after 12 weeks, with the school insisting she keeps up regular visits to monitor progress and me facing the prospect of enforcement action against the LA if they don't deliver on statemented provision. 

Does your daughter have autism and selective mutism?  If both, then that's going to complicate the SM intervention I would have thought.  'Aspergirls' by Rudi Simone has a chapter devoted to mutism and puberty - spectrum girls and mutism do seem to go together...

If I were you (and I was you when my daughter was in year 4 - so do learn by my mistakes!), I'd:

1.  Get on IPSEA's website, download the template 'Request for Assessment' letter and bash it off without delay.  In the meantime (if you have resources - this all costs - heaven knows what families do who have no cash to spare...); research SLTs or other professionals with SM and (if relevant) autism experience and have your daugther assessed, with a view to getting a tribunal-friendly expert report setting out recommendations for provision/intervention. 

2.  Even if the LA concedes a statutory assessment, when it comes to specifying provision in a statement, they will be vague to the point where you'll have nothing to enforce - so your private report will come in handy at that stage.  It will also come in handy when haranguing the school for more action.

3.  I got fobbed off for far too long with the kind of vague 'help' at school that it sounds like your daughter is getting.  For entrenched SM, they need to look at the chapters in the SM manual that set out what a structured programme of intervention looks like and be asked what their plans are for putting something in place that is regularly monitored. 

4.  Nag the NHS SLT services for something more structured.  I got so fed up with our local services that I ended up complaining - it's a disgrace really - there's a manual out there telling everyone how to do it properly and no one is prepared to give schools the support they need with these more complex cases. 

5.  Try and involve the Ed Psych service - SM intervention is a behavioural intervention and, in my daughter's statement, CBT is recommended to reduce anxiety.  Typically, the LA did nothing about making provision and primary school were happy to sit on their hands.  Big school, yet again, were having none of it - they nagged the LA about it and the Ed Psych eventually offered a trainee Ed Psych as a weekly resource.  She's great and did a very good report for my daughter's recent annual review, with weekly therapy sessions recommended after school.  With her on board and a very keen associate SENCO fully committed, I suspect this will end up supplementing (or supplanting) whatever the SLT comes up with in the way of a SM package.

6.  The most frustrating thing is how long everything takes.  That's why I'd get your request in pronto, expect it to be turned down, expect to appeal and, in the meantime, you can be getting on with preparing evidence, nagging the school to do more (I gave secondary school a copy of the SM resource manual - they said they've turned to that much more often than anything the NHS SLT has given them).  You could ask the school to come up with a plan for a structured intervention programme pending your request for assessment.  If they say they don't have the resource, you could ask for the issue to be referred to the Governing Body because it's not on that some schools just don't do anything without being constantly nagged.  Obviously, you've got a relationship to maintain with them but it does get to the point where you've got nothing to lose really...  If nothing else, they should be supportive of your request for assessment, I would have thought.

I thank my lucky stars my daughter is at the school she is now but, as may be just a little bit too apparent from what I say above, it just serves to annoy me even more about the shoddy efforts I've had to put up with to date.  Trouble is, you get so used to no one doing anything, that becomes your new 'normal' and I've only recently stopped apologising to Big School every time I contact them - I'm never made to feel a nuisance - on the contrary, they've been at pains to tell me it's very helpful to have parental support/insight and nothing (yet...) has been too much trouble.  The whole feel is just much more professional and business-like.  It's just a pity that, with so little progress made in primary years, the problem is more difficult to tackle now.  But we are where we are with it - and at least my daughter's a generally chipper little thing in her own (very) quiet way.  Or very noisy way, if we're talking about home time...

Anyway - do let me know how you get on - I've made every mistake in the book and will be only too pleased to help anyone else avoid just one of them...!