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NEW: social and emotional development delay.

(14 Posts)
TICKLETUMBLE Tue 01-May-12 07:25:26

Hi. My adopted son who is 5 years has been assessed (yesterday) by a school behaviour support assessor as having social and emotional development delay. essentially, even though he is learning well and is evidently very bright meeting (and surpassing) the academic expectations for foundation level learning, his play, understanding and reactions to circumstances and interactions with other children are in the realms of a 2-3 year old.
He was premature and had speech delay, which we had thought was due to a tongue tie but this may have been coincidental.
while it provides some relief and explanation about the difficulties he is having at school and at home with his behaviour and choices he makes, its also worrying and throws up all sorts of questions - how do we help him, will he 'catch up' and how, is it something we did wrong or didn't do and how do we fix that? feeling bad about having worked with him in a way that says 'come on you're not a baby any more, 5 year old can do this stuff', when actually in some areas, no he cant.
There is no talk or mension of any defined disorders - I had thought ADD or an autism spectrum issue, dyspraxia etc. when trying to fathom why he was unable to sit down and join in, participate for more than a few minutes in a task, throw tantrums when tasks he is enjoying come to an end, being unaware of his surroundings and others near him to the extent that he bumps into things and people while doing his own merry thing instead of what the rest of the class is doing, why he is not conserned that he is not doing the same things as the rest of the class, no thought about consequences for things he 's about to do no matter how many times he hurts himself or gets told off if its something he should not be doing, is not picking up on other's emotional or behaviour cues or copying peer behaviour etc.
So just looking for some input about what to expect now. Interested in any experiences with children with this kind of difficulty.
would appreciate any help...very worried mum.

Triggles Tue 01-May-12 07:51:09

Sorry, but what is a "school behaviour support assessor?" Is this a medical professional, such as a paediatrician? Or a school employee?

Has he seen a paediatrician to get an actual diagnosis? If not, I would get a referral from the GP or school nurse to the paed for assessment.

TICKLETUMBLE Tue 01-May-12 09:17:26

Hi, good question. Its a special needs eduactional proffessional assessing his behaviour in school, rather than a medical assessment. I thinka referral to the peadiatrician is the next step.

Triggles Tue 01-May-12 09:31:25

Yes, if that's the case, they can't really dx your child. You definitely need to get him in to see the paed for an assessment.

Triggles Tue 01-May-12 09:39:15

If the school is stating he has special needs, then have they said what they are going to be implementing to meet those needs? If they haven't, then you should be asking what they are going to do ... and that includes getting a statement if need be.

I'll be interested to see if they say he doesn't need one because he is academically ahead (which isn't true, by the way). I'm surprised they haven't recommended him being assessed by a paed as the concerns you are listing do seem to warrant further medical follow up. I'm sure there will others that will pop in and give some good advice on things to sort out now with the school.

StarshitTerrorise Tue 01-May-12 09:54:24

Hi Tickle. You need to go to your GP and ask for a referal to a developmental paediatrician. Look up the CHAT and MCHAT questionnaires and the NAS site as well as dyspraxia and ADHD symptoms. Write down every 'symptom' that comes up from anywhere and write a concrete example next to it. This will get you taken seriously.

Secondly be very cautious and head off quickly any talk of attachment disorder. Unfortunately with an adopted child this can be assumed a d used as an excuse ti ignore other signs and deny therapy.

You need to be quick with all of this if you can. The older the child gets, the more complicated the system to access help.

Hth

TICKLETUMBLE Tue 01-May-12 15:56:35

OK. Its all very new and unclear who is supposed to do what and when.
No idea why they have not proposed any further clincal assesment but maybe that will be in the written report. We will await the report of the assessment that has been completed yesterday and see what is stated in there and then move to get formal assesment by paediatrician for development delay, or other diagnosis, regardless of any recomendations as its obvious some things need to be ruled out and the support offered needs to be appropriate and not just symptoms based.

thanks for your comments and suggestions....much appreciated.

Triggles Tue 01-May-12 17:16:30

Just to let you know, it can take months to get in to see the paediatrician and you most likely won't get a diagnosis for some time while they do varying assessments. You can always work on getting the referral - even if it takes them a month to get the report back to you, the chances that you'll have seen the paed by then are pretty slim. I think it was 2 months before DS2 saw the paed, and we were told by others that we got in really fast!

Support isn't decided by diagnosis, it's decided by the child's needs, so in a way it IS symptom based. Yes, they need to consider what's causing a particular behaviour - but not by saying "he has ASD so he is doing this" as much as "he has sensory difficulties and this seems to be too much for him based on his behaviour, so let's try this to see how it helps him cope." They don't need a diagnosis to provide support, just a meeting with you and those who work with him to discuss what needs he has. At least to get things started.

StarshitTerrorise Tue 01-May-12 18:00:04

What Triggles said. Don't be waiting for report or anything. There are a billion resourced saving delays built into the system already, and any request or referral can be cancelled, but I'd get a move on tbh.

StarshitTerrorise Tue 01-May-12 18:01:21

And support/provision is supposed to be needs based, but often you will find that needs are ignored unless a medical person points them out.

mariasalome Tue 01-May-12 23:50:05

Paediatrician not Camhs if you think he has bogstandard ADHD/asd type stuff rather than attachment disorder. This is very important. Normal IQ and Below 5/ always paeds, above 5/ CAMHS... Still 5/ up to mum. Ring your local branch of the national autistic society and ask which paediatrician is locally reputed to be good at listening to sensible parents, and interested in asd etc. Tell the GP of course you don't mind if naming that person means a longer wait for the appointment, and yes you'll cope if it's the registrar who sees you cos you know the chief will be there if needed.

mariasalome Tue 01-May-12 23:52:06

Dc can of course have both issues, so the RAD label can be requested later if it fits then and/or it seems treatment might be helpful.

mariasalome Tue 01-May-12 23:57:42

And delay can be just that: if he missed a lot of learning opportunities before coming to you, you'd expect a delay. And the first x months with a forever family are a time when you (and he) would rightly prioritise family bonding, love, fun and familiarity way ahead of the hard, boring graft of learning to play nicely with other children in a sandpit.

TICKLETUMBLE Wed 02-May-12 10:24:37

thanks to you all. another nights sleep to think about it, consider the feedback and start taking action is what I needed. Thanks for the advice about asking for referrals. we wanted as much information as possible but if waiting for the report will cause a delay in getting action taken then sod it, we'll just ask now - hubby is at Docs now discussing it.
The wheels are in motion to get an extra person for him for 15 hours a week (hopefully trained and useful and not just a baby sitter) , and he already has a TA that spends a lot of her time with him anyway, just becaus ethat's how it worked out for the benefit of him and the class. the staregy is being worked, and we will fight to get all the help he needs.
Thanks again.

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