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Newbie - Expressive Language Disorder

(13 Posts)
feelinkindacrazy Tue 16-Aug-11 19:53:15

Hi there,

I'm a newbie and seeking some guidance from like minded people who are in similar situations smile

My ds was diagnosed with an Expressive Language Disorder recently and is due to start school in september. He has a SALT and she advised he will be on SA+ and that she will go into the school in Oct / Nov to review him. It all feels so overwhelming, uncertain and "what did i do / didn't I do" as he is my first child. I also feel bad as I believe there may be more to it as I also feel he has receptive issues that the SALT has not yet picked up - could there be more to it?!? I am so worried about how he will settle into his school, making friends, is he likely to be picked on!?!?! So many worrying thoughts for him.

Can anyone give me any more insight into their experiences, what happens now from a school perspective and what should I make sure happens, have any of your children been diagnosed with a disorder and later had further diagnosis?

Friends and family try to understand but just seem to say "I am sure he will be fine" or think I am just wittling or worrying unneccesarily!

I do feel I could go on, but don't want to waffle.

Thanks

bialystockandbloom Tue 16-Aug-11 20:44:52

Hello smile

My ds has ASD, not specifically a language disorder (though that comes into it), and is starting Reception in September too. Pretty daunting isn't it.

I think the best thing you can do at the start is talk to the class teacher and senco at the start of term. Do they know of his dx? You need to thrash out with the school exactly what support he will be getting on SA+. My ds had this at nursery (before his statement came through) and it was 15 hours per week (supposedy) 1:1. You need to discuss exactly how the hours will be used, and what support he is going to have.

Try making a list of what you think his needs will be, and where he needs most help - eg playtime, freetime, or structured activities? You mention social skills/making friends etc - this could well be an area of concern as if he struggles with expressive language that could affect his social interaction, so I think if it were me I'd be pushing for specific support with this - maybe small group activities or something. I'm sure the class teacher & senco will have experience of this.

Monitor it - if you think he needs more than the school can provide, look into applying for a statement.

And if you think he has more difficulties than the SALT picked up on, push for more assessment and help and give her examples of what you see. Don't be fobbed off.

Family reactions are really frustrating. They're probably just trying to make you feel positive but it is misguided when what you want is them to understand what you're saying and work with you to find help. I've had a year of most of my closest family not even mentioning the A-word, or acknowledging the difficulties ds has, or at the other extreme doing the whole tilted-head "ah bless him" rubbish angry

feelinkindacrazy Tue 16-Aug-11 21:32:02

Hello bialystockandbloom smile

Thank you for your reply - it's nice to have contact with someone else who can sympathise and understand some of the emotions.

I have been in touch with the head teacher (senco) and class teacher about ds diagnosis but I have to say I did feel a little "fobbed off" and as they hadn't had the report from the SALT I felt he may have thought I was an over potective first mum! I was also concerned that the senco advised that ds would be on School Action, but I understand he should be on SA+ as a SALT is involved and that an IEP would be drawn up for him, but again I was told not!! Feeling a little out my depth I walked away, but I do intend on following it up and requesting a meeting before half term so they can give me there thoughts on my ds and areas ds requires support in their opinion. Do you feel this is reasonable? I also really appreciate your paragraph on a "list of areas to provide ds with support" and you have made some very valid points that I will add to my list and perhaps discuss with the class teacher at my home visit - thank you.

It's all such a "minefield", don't you think? It also seems a fight to get diagnosis, direction and support.

My ds had a very traumatic birth and suffered lack of blood and oxygen and lucky to be here. At the time his future was very much unknown and he has proved medical professionals wrong and it's amazing how far he has come but you just want the best for them don't you?!?! I then think family and friends just think I am looking for things, but they don't understand!

You sound very clued up on everything - how do you understand exactly what support he will get through the school? Is this something that the SALT will give guidance on?

Thanks again

bialystockandbloom Tue 16-Aug-11 22:38:52

Basically, services like SALT, OT etc are from the NHS. Support in schools comes from the Dept of Education.

So no, the SALT won't (can't) direct the school on what support they will give. All the SALT will do is provide whatever speech & language therapy she thinks necessary, and probably advise the school on strategies and suggestions they can use during the school day. But she can't tell the school to put him on SA+, it's not her remit.

It's all such a "minefield", don't you think? It also seems a fight to get diagnosis, direction and support. Yes you are absolutely right! Sadly (sorry, I probaby sound bitter!), you soon learn that it is up to you to look for whatever help your child needs, and then fight for it. You might have a fantastic individual teacher or senco or salt or whoever, but you are the one who will get the help your ds needs.

So, with support in school: to get SA+ the school need to recognise that the support available from SA isn't enough. I wouldn't worry too much at this point that they're saying he's only on SA - he hasn't started yet and they don't know him, so they're probably being a bit optimistic. I suspect after a few weeks or by the end of the first term they'll see if he needs more support.

Having said that, given your ds's diagnosis, your SALT is a great ally to have, and (unfair as it may be) the school may be more spurred into action by a 'professional' than by a parent, so if you can get the SALT on your side and help you to get more support, that will certainly help.

EllenJaneisnotmyname Wed 17-Aug-11 01:27:47

My understanding of school action plus is that if an external professional, like a SALT is involved, that is the 'plus,' so your DS should be on school action plus and should be getting an IEP even on school action. Have a look at the SEN Code of Practice link here especially at the school action and school action plus sections. This is the current requirements for schools, which will change in a couple of years when the new SEN Green Paper rolls out, but hasn't changed yet.

Become knowledgeable because, unfortunately schools don't have infinite resources and will often do the bare minimum. If you can say, "But the SEN Code of Practice states that at School Action

Strategies employed to enable the child to progress should be recorded within an Individual Education Plan (IEP).
The IEP should include information about:
the short-term targets set for or by the child
the teaching strategies to be used
the provision to be put in place
when the plan is to be reviewed
success and/or exit criteria
outcomes (to be recorded when IEP is reviewed).

or

At School Action Plus external support services, both those provided by the LEA and by outside agencies, will usually see the child, in school if that is appropriate and practicable, so that they can advise teachers on new IEPs with fresh targets and accompanying strategies, provide more specialist assessments that can inform planning and the measurement of a pupil’s progress, give advice on the use of new or specialist strategies or materials, and in some cases provide support for particular activities.

as an example, your are working from a position of power. HTH

feelinkindacrazy Wed 17-Aug-11 07:49:37

Thanks for your responses.

EllenJaneisnotmyname - in your experience would you wait at least a term before expecting any sort of IEP / plannng to be put in place? I was thinking of speaking to the class teacher / head teacher (senco) further just before half term to get their thoughts on ds and where they believe he needs support and not just relying on mine and/or the SALT's thoughts. Moving forward how often would it be reasonable of me to be requesting to meet (if they haven't prompted it) as I want to let them get on with their jobs and not hound them but at the same time making sure they meet ds needs? Apologies for all the questions, I just want to make sure I go about things the right way.

IndigoBell Wed 17-Aug-11 07:55:34

I think tell them in the first week what his problems are, and then request an IEP review meeting for a few weeks time smile

They don't have to do an IEP, but it's 'best practice'. If they don't do an IEP, they still have to show you how they are supporting him......

If they still resist you with the IEP, draft your own one, and give it to them. Then they'll have to do one - or agree to yours smile

Don't worry whether he's on SA or SA+. All SA+ means is that the SALT is going to visit him - and she is going to visit him.

And don't worry about him being bullied, IME reception kids really don't notice much. My DS2 never even told me there was a girl in his class who was blind! Kids do a lot of running around at lunch which doesn't require any talking, or very much understanding of 'the rules'

feelinkindacrazy Wed 17-Aug-11 09:23:52

Indigobell -thank you so much for your message.

All this great feedback really helps - makes you know your not alone smile

working9while5 Wed 17-Aug-11 10:44:09

The key thing to get right is that they understand expressive language disorder.

It is pretty poorly understood by most professionals who often find it really hard to distinguish it from delay and will say things like "but he's doing so well with construction/maths/etc etc, I'm sure if he tried harder his language/literacy would come along".

Have you been in touch with Afasic or ICAN?

Don't worry about the label being "expressive language disorder" at this point in time, it doesn't mean that he has no receptive issues, just that the expressive side of things is much more serious right now.

If I were in your position, knowing what I know as a SLT, I would:
- ask to meet with the SALT on my own to talk through this diagnosis. Explain that you are wondering what you have done/haven't done/could have done better and you could reallly do with the SALT sitting down with you to explain it and give you things to read about it (even if you don't want to read anything, this will make them prepare!)
- ask if there is a specialist in language disorder who will see your son. If there is and your son isn't eligible, say that it would help you a lot if you understood how expressive language disorder was dealt with by the service over the school years so that you have an idea of how things will develop
- ask if there is a language unit in the area (or a specialist resource attached to mainstream schools) and what the eligibility criteria are
- Ensure that there is a proper diagnosis of Specific Language Impairment - this means that an Educational Psychologist really needs to have done a cognitive assessment (with an actual assessment vs just observing)
- Become well versed in understanding test results e.g. centiles, standard scores etc. The thing you will need to be able to do as a parent is to understand these and the discrepancies between receptive/expressive etc and what is a "normal range" so that you can advocate for your son.
- I can help with this but I am off on my holidays tomorrow to a land with no internet so it might take me a while, please bear with me.

There are a lot of good interventions for expressive language disorder. I work with teenagers with expressive language disorder and most of my last cohort of Year 11's got good grades at GCSE A - C (and most of these would have done a lot better if they had earlier intervention).

I will also say, as much as it makes me feel like a traitor to say it as a public sector worker, that if it were me and it were my child and I could AT ALL afford private speech and language therapy, I would get it now. Regular intensive therapy can make a big difference. If you can manage it, go for it.

feelinkindacrazy Wed 17-Aug-11 16:48:19

Hi working9while5,

Wow - excellent feedback thank you so much for taking the time and do appreciate it and any further advsie you can give on your return from holiday.

My ds is to enter a mainstream small Primary School with very few children with SEN and when I discussed his diagnosis with them I have to say I felt a little concerned about their understanding and guidance to me for moving forward, but I took the descion to take a step back for a couple of months to allow my son to settle in and his SALT to go into his school in Oct / Nov and go from there. I thought I'd go and see the school again just before the oct half term and the SALT goes into school to discuss the schools thoughts on ds and where he needs support from their perspective.

I am also keen to attain a formal assessment of him as I feel the diagnosis is still a "little woolly" although I do agree it sounds like my ds had this disorder and in my opinion there maybe more to it, hence me wanting a formal assessment. The SALT had thought it was delay but at his last review felt things were now disordered and although he is making progress it isn't "taking off" and hence the diagnosis.

Can you advise on how I go about getting a formal assessment? I had also considered private SALT but although we aren't really in the best financial position at the moment, I would do my utmost to attain the money. Can you provide guidance on finding a suitable SALT, how much do the sessions cost, how often and for how long would he need them? Does this mean we will be "struck of the nhs list"?

I have seen the Afasic website and found that to be really helpful and attained so much information both bought and free - many factsheets I printed and gave to the school. I found this website "mumsnet" and felt it perfect to talk to like minded people in a similar situation for "real life" experience. I shall also look at ICAN later.

I have taken on board all your points and will progress them and will await your response as I am keen to do what it takes to help my ds, aged 4 now!

Thanks again and have a good holiday.

working9while5 Wed 17-Aug-11 19:59:27

Hi there

You need:
- a CELF-P or CELF 5 - 8 (is your ds 5). This is the Clinical Evaluation of Language Fundamentals. It is the gold standard for diagnosing language disorder for SALTs in this country. The whole thing needs to be done. This will take 3-4 sessions
- You will get a variety of scores from this assessment. These cover different areas of language - there is a "core language" score, an expressive score, a receptive score etc. I don't work with this age group anymore so am a little hazy without a form in front of me on each one
- There is a box on the front of the form where the therapist can enter figures and work out if there is a statistically significant discrepancy between e.g. receptive and expressive language.
- A child can have a "flat" profile e.g. no discrepancy between receptive and expressive language but have a major difference between their nonverbal ability as measured on an EP assessment of learning and this (or similar) formal assessments
- Specific Language Impairment is the name given to disordered language where nonverbal learning is significantly better than language. diagnosis of Expressive Language Disorder doesn't necessarily mean these difficulties are specific to language (as you can have disordered speech and some learning difficulties), so this needs to be clarified. An EP assessment is what you need for this..
- There are also features that indicate specific language impairment - difficulties with word order, wordfinding, inverting questions, leaving out the little words in sentences etc. Too many to go into here and not all of them will be relevant to your situation, it would be good to get some clarity from the SLT.

I wouldn't leave it until October or November to be honest. It sounds like you have been given some information but you really need to talk with the SALT about this information for it to make more sense. You need to know in a bit more detail why this diagnosis is being considered or has been given and what will happen next. You can phone up and chat it through, it shouldn't be a problem.

Private speech therapy - ASLTIP is the association of private therapists. They have a webpage www.helpwithtalking.com (off the top of my head, in a rush!) and you can enter your post-code and your child's age and what you are looking for and you will get little pen portraits of therapists working in your area... then you just have to decide! Some will be more expensive than others but it's not cheap. An average assessment is £300+ and sessions are between 50 and 70 a pop.. how much therapy is needed really depends on what's happening. Some of my colleagues do private work alongside NHS work and they train parents how to do therapy themselves, then review e.g. every three months. When you have a private therapist, you can negotiate the service you want a bit more than with NHS therapy.

You will not be struck off the list if you access private help - however, you must make sure that the private therapist keeps the public one informed if they do any assessments or create a treatment plan. This can be important later on if you ask the LEA to pay for therapy, as the private therapist needs to be seen to be collaborating with the NHS one. I have worked as an NHS therapist with some private ones and I LOVE IT. Often what has happened is that I will do all the assessments using the expensive assessments like the CELF that not all private therapists have ready access to and co-ordinate with the local multidisciplinary people while the independent therapist continues on with therapy and keeps me updated on treatment plans. It can really work well as long as both parties are open and not too egotistical, if you know what I mean. It would be my preferred option if my child ended up having difficulties.

HTH, not sure I covered everything but I will be back!

feelinkindacrazy Wed 17-Aug-11 21:14:45

Thanks so much - not sure I understand it all, but I'll do a bit of cut and paste with all the valuable infomation you have given me and meet up with ds SALT to discuss in more detail.

Have a great holiday

working9while5 Wed 17-Aug-11 22:35:27

Sorry! I am rushing about the house and have just realised I have lost a load of train tickets we need for these hols, so it's all been a bit rushed.. just to give you pointers to discuss with SALT. Good luck!

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