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New to all this - SLD/ASD? what does report mean? SEN? Daphne Keen??

(9 Posts)
AngelicaM Fri 14-Nov-14 11:33:50

This is my first time posting after lurking for a while, so apologies if I do anything wrong. Am desperate for some advice. My very happy, very content, lovely 26 month DS has been giving us cause for concern for some time, mainly with regard to language. He was very poor/non existent verbal comprehension and very few words, some of which we lost at around 18 months. He shows a few 'red flags' for ASD ( poor eye contact, not answering name - all of which are improving all the time) but the private SALT we have had working with him for the last few months and his lovely key worker at nursery both feel that whilst he is showing some major points of concern, it's not ASD. I am not so sure. So, after waiting an age for a pediatrician referral, and finding our the local development paed has gone on long term sick, I made a private appointment with a consultant general paed who is in the same NHS Trust. He has given us a report that says among other stuff:

DS 'is too young to diagnose as having ASD and at this stage should be regarded as having severe language delay and a problem with auditory processing...he would benefit from one to one assistance to keep him on task...He requires intensive speech and language therapy and monitoring both to understand his difficulties and in particular to understand his difficulties with social communication'

He goes on to basically say he wont rule out ASD, but he takes heed of the opinions of the people who have worked with him - private SALT and Nursery Key Worker. I have arranged for private SALT to start weekly sessions (I really like and trust her, as does DS) and have enrolled on a Makaton training course myself. The NHS SALT we've had three trips to, whilst sweet, seems pointless, and despite the paed's report saying 'intensive SALT required' she merrily waved us off this week and said she'd see us in four months??!

I obviously have a million questions, but I think the main ones keeping me awake at night are:

* Should I be starting the SEN process based on the wording in the report? He has a fab nursery but he'll move rooms in a few weeks and it's a much bigger class so wont be getting spoilt the attention he has been. I guess I just feel like that's making it all very official and scary, and maybe labeling him? Or have I got it utterly wrong, and that isn't the right thing? The Early Years Team have written to say we're on a waiting list and they can't take us at the moment.

* Meanwhile, a month ago I made contact with Daphne Keen's PA and we are on the waiting list with the hope of an appointment with her late Jan/early Feb - I know it might be longer. Should we still go to this? It is silly to see another paed so soon? Is he too young, and is it too tricky to assess him at the moment as 'he presents a mixed picture' that I should 'save' Daphne Keen for when he's older? Or is she infact the perfect person to see as she might make a more accurate assessment of him?? Will seeing her 'confuse' things - the system I mean??

* Should I expect nursery to be sitting down with me and making a more formal plan ( we have some constructive quick chats over the stairgate at drop off but that's all so far) or does that come after Early Years come in??

I would be so grateful of any advice, I am sorry it's turned out to be such a long post. Yesterday was a 'crying day', today is a 'get stuff done' daysmile

StarlightMcKenzie Fri 14-Nov-14 12:33:10

'DS 'is too young to diagnose as having ASD'

Your DS might be, but generally speaking 26month is not. In the US where there is more expertise it is diagnosed at an average age of 14months.

I would keep the DK appointment and be confident in her opinion should she not be able to dx ASD. The other guy, not so much.

You should look into:
Hannen - More than Words
PECS
ABA (particularly verbal behaviour, Early Start Denver Model and Pivotal Response Training)

If he requires 1:1 assistance to stay on task and intensive speech and language therapy and you have that in writing, I would apply for an EHCP on the basis that he will probably need one when he starts school. Children can be given them from the age of 2 and may bring in more expertise into his nursery.

StarlightMcKenzie Fri 14-Nov-14 12:36:01

Welcome to MNSN board by the way, and sorry you have concerns for your child.

Icimoi Fri 14-Nov-14 12:41:37

I agree you should apply for an EHC Needs Assessment based on that report. The new Code of Practice puts a lot of emphasis on the importance of early identification so you could refer to that in your request.

StarlightMcKenzie Fri 14-Nov-14 12:45:46

Sorry, ECHPs can be given from age 0, not age 2 (that was old system), but my point is that you should ignore anyone who says that he is too young for one.

AngelicaM Fri 14-Nov-14 15:39:29

Thanks so much for your replies StarlightMcKenzie and Icimoi. I I am very lucky to have a great support structure in family and friends, but I am finding it exhausting trying to explain the system/options to those that don't (and why would they!) know what I'm on about. I'm very realistic that it is leaning towards an eventual ASD diagnosis. I agree with you Starlight that I don't have much confidence in the current report, and one from DK would be definitive, even if it's definitive 'can't call it yet' if that makes sense. I knew SEN had been replaced, thanks for the pointers, and again agree that he will (barring a small miracle) need support once he starts school so may as well crack on!

StarlightMcKenzie - I have the Hanen book and have looked at a PECS course, think that's my next step. I am trying to digest all the ABA info, I've read quite a bit on here, but still finding it hard to follow the different approaches and I find the processes suggested of finding consultants and tutors a bit vague, so will keep soaking up the info, would you suggest ABA even if it's just for the communication issues at the moment without a firm ASD diagnosis?

StarlightMcKenzie Fri 14-Nov-14 16:02:55

ABA isn't for children with ASD. It's one of the most efficient and effective ways of teaching ANY child.

It's just that children who don't have impaired social skills are motivated to grab what learning is available regardless of the chaotic way it is presented and to please the teacher by doing so. ABA is structured and progress is carefully monitored and doesn't need much extrapolation or interpretation to ensure learning happens.

It's most valuable offering early on is the very detailed analysis of skills a child has and those which are emerging which gives a clear indication of the next steps that need to be taught.

sickofsocalledexperts Fri 14-Nov-14 18:38:08

I just sent you by private message some stuff I wrote about my early experiences of ABAA, which really helped my boy. May or may not help but could clarify what ABA is

AngelicaM Fri 14-Nov-14 21:56:10

Thanks for the info sickofsocalledexperts, it was really informative and has given me a great focus to look into things more. Thanks for your advice too StarlightMcKenzie.

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