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What happens if AS school can't cope with ds???

(22 Posts)
Shellywelly1973 Thu 27-Sep-12 01:22:04

Would welcome some advice...

Ds7 has dx of ASD & ADHD. Very bright boy,I.Q 126,socially &emotionally about 3yrs.

He transferred to an independent AS school last February. He seemed to be improving but from about June became very unsettled.

This term is even worse. He has 1-1,class of 3. O.T, SALT,various therapies.

They can't seem to manage his very challenging behaviour. I am worried what will happen if he doesn't settle. As a very well known&expensive school, i am sure they wouldn't want to admit they can't meet his behaviour needs.

I dread reading his home/school book!!
I feel certain members of staff particularly struggle with him.
What would happen,if they say they can't meet his needs?

TIA...

Shellywelly1973 Thu 27-Sep-12 01:25:04

P.S HE is not an option!

madwomanintheattic Thu 27-Sep-12 01:32:35

Not meeting his needs isn't an option. They will need to work out how to do it. Or the LA will need to work out how his needs can be met in a different setting.

The solution is not for you to take over their job.

Have you looked into the 2e side of the house much? I wonder if they are concentrating too much on the one and not enough on the other... How much do they know about 2e kids?

Iceflower Thu 27-Sep-12 09:53:12

Just a thought, do you believe ds has the right dx? I found with my dd's independent AS school, that they were very formulaic, ie AS = routines, visual prompts etc.

Nothing worked with dd as all the profs used AS strategies, until one day the clinical psychologist suggested a secondary dx of PDA, whereupon one and all fell on it and said, yes of course, that's why nothing worked.

I'm not suggesting this is the case here, but it may be something to bear in mind . Dd also has a similar iq smile.

AgnesDiPesto Thu 27-Sep-12 10:27:17

I was going to ask the same thing - what strategies / approach does the school use? We all get fed the all children with asd are different etc etc need to teach to their learning style....but then schools tend to stick with one approach. TEACCH type approaches did nothing for DS (visual stuff, timetables, sensory adaptations). I mean he was in mainstream and they were not used in the full TEACCH way, but we never noticed any change or improvement in a year, if anything he went backwards. But ABA was totally different he responded from day 1. He is very passive / lacked motivation to learn himself so would not follow a visual TT etc as not interested. He needed the adult directed, must comply, reward based approach. His behaviour would be terrible if he did not have ABA approach. Challenging behaviour approaches overlap a lot with ABA.

Shellywelly1973 Thu 27-Sep-12 13:41:52

Thank you for your responses.

I have had my doubts about his dx to be honest...but its from GOSH after he recieved no dx at our local CDC.

The report & i quote'...presents as having very complex neurological issues...not dissimilar to ASD&ADHD...'

I will look into ABA again,I have been on a couple of courses

PDA has always been in the back of my mind but i didn't want to pursue it as a dx, it wouldn't have helped in respect of schools. He was excluded by the time we got to GOSH, he was excluded by the time he was 5!

Thankyou again...

madwomanintheattic Thu 27-Sep-12 14:15:41

Not dissimilar to?
<sigh>

Did the gosh psych come up with a list of suggestions for managing behavior and school? These should be implemented by school as an individual support, not a one size fits all solution for conditions he doesn't actually have.

<I have a gifted kid with an ADHD dx and aspergers traits, nowhere near as complex, but I absolutely recognize that his own particular combination of circumstances needs a very individualized approach, or life is much much harder. And I'm not entirely convinced about dx, either>

mariamma Thu 27-Sep-12 15:51:52

Presume he's had a trial of low dose methylphenidate? Sometimes taking just the impulsivity down a notch can make a big difference to behaviour, at least it gives my DS (also asd /ADHD /similar IQ, age 9) a split second to decide 'not' to do whatever has occurred to him.

madwomanintheattic Thu 27-Sep-12 18:07:25

Mm, I was wondering about meds. Ds1 takes Vyvanse. It would def be worth a trial to see if it makes any difference... Ds1 says it makes him easier to control, form both his own perspective (controlling himself) and anyone else trying to control him...

Shellywelly1973 Fri 28-Sep-12 00:21:58

Ds was on Concerta XL but the side effects were awful. Stopped sleeping & eating. Started Equasym XL 20mg about 13months ago. Does help,but sleeping is very difficult so now on melatonin. His eating has improved but not great,but his weight is stable.

GOSH recommendations were far&few between. They recommended he stay in mainstream... No follow up appointments. We were referred to our local Camhs. They have very limited resources. I could have attended a positive parenting class but ds was out of school so i couldn't attend. Nothing else apart from medication.

Ds new school is the only help i have had to manage his behaviour... And now they are struggling!

mariamma Fri 28-Sep-12 11:05:02

Sounds like off-the-peg stuff is near useless for your DS, whether that's NHS or educational. If he was too complex for GOSH, it might be reasonable to seek a third opinion to properly clarify diagnosis and recommendations.

GOSH are reputedly excellent at clever dc whose typical asd and or ADHD is masked by their IQ. This is not necessarily synonymous with being great at the truly confusing neuropsychological problems.

madwomanintheattic Fri 28-Sep-12 14:40:28

Are you a member of any of the 2e organizations? They have some great leaflets and advice. Some of them in terms of supports are very US based (ie 504s instead of statement advice) but the actual practical teaching suggestions are obviously transferable. I think nagc has some asd stuff too that might be more accessible. Certainly I know one of the universities ran a conference on dual exceptionalities a few years ago, with both teacher and parental involvement.

I'm wondering if you need to investigate further why they are calling it complex neurological issues (that aren't asd but look like it). I assume he has had a routine MRI along the way (if not more than one?). I have an acquaintance who is a paediatric neuro with a research interest into brain development who is my 'go to'. I'm trying to picture what she would mean specifically and struggling. (We have the suggestion that my ds's issues are cortisol related, for example.) I also have a friend whose ds was dx asd for many years, but was later found to have a different brain condition that just looks very like asd. It was only found on a routine MRI for something else (his brother had been having migraines and they found an abnormality which could be genetic. It all fell into place and the 'asd' child was found to have a more serious form of the same condition. The support for the AS had been singularly non-productive, but now they are able to look for different condition-specific support, which is slowly proving more fruitful)

Mm. It isn't a one size fits all. If GOSH recommended he stay in mainstream (presumably with 1-1 support) how did he end up in ss? (One of my other children has cerebral palsy and is gifted - it was very much a given that she would be a mainstream kid with 1-1.) were the ms unable to cope? Did he have ft 1-1 in place? I often think that ms is a better place to be for more unique children, as the support is personalized for them, and they get more 1-1 than they would in ss. Expectations are also more individualized.

madwomanintheattic Fri 28-Sep-12 14:41:23

<I didn't know that about gosh, mariamma - I wish I had!>

mariamma Fri 28-Sep-12 16:25:15

I don't 'know' it, but friend's DS is exceptionally complicated so she asked her paediatrician for 2nd opinion at the GOSH social communication disorder clinic. Paed and Camhs liased (yep, effectively) and arranged assessment elsewhere, figuring that the asd-IQ bit was relatively easy and wasn't the part they most needed help with.

madwomanintheattic Fri 28-Sep-12 16:51:51

Fascinating. <adds to 'useful things to be aware of' list> good for them to recognize that, too.

madwomanintheattic Fri 28-Sep-12 16:52:46

Where did they end up? <curious. I'm not even in the country, but dead nosy who would be the port of call for such cases>

Shellywelly1973 Fri 28-Sep-12 16:55:39

The ms school were determined to keep ds. They tried everything. He had 1-1,great statement,great statement,E.P very good&hands on but nothing worked. Ultimately ms school excluded him so LEA were forced to help. They offered ds current setting,only child in the school who didn't get his placement without going to tribunal.

Ds has never had an MRI.

How would i go about having him reassessed? GP wouldn't even refer him for a 2nd opinion!!

Shellywelly1973 Fri 28-Sep-12 16:57:51

I've never heard of the 2e organisations... Off to goggle it!!

Thankyou for your responses!

madwomanintheattic Fri 28-Sep-12 18:59:49

Ok, do you still have access to the gosh specialist that did the assessment? Did you have a full debrief, or just get a copy of the report? We have had much better info and meaningful discussions with neuro in follow-up appointments, tbh. Is it worth asking for an appointment to ferret into the complex neuro but not asd stuff? With the specialist that wrote the report? I would use the 'mainstream but moved to ss and it isn't working' as your rationale for further discussion with the specialist, particularly as their advice has been disregarded.

I don't think gp gets the option to refer for second opinion, do they? I thought somewhere along the line it was chartered?

Who is your current paediatrician? In times of dire need, I find calling their secretary and bursting into tears a reasonable approach. Save it until you really need it though. I'm not advocating putting it on grin it tends to have a good success rate with finding cancellation appointments in short order. Are you with the community paed? I don't bother with gp. They have no clue. And most comm paed's don't either, but they are better at referrals (they can tap into a wider network and palm you off on someone else quicker. It's a win-win.)

If you don't get many hits, try 'twice exceptional' and similar.

ouryve Fri 28-Sep-12 20:52:14

agreeing with madwoman about googling for "twice exceptional" - it's how I worked out that there was a name to describe kids like DS1.

His diagnosis is a dual one of ASD and ADHD and he is helped a lot by medication - atomoxetine in his case, since he suffers a lot with anxiety and appetite loss. He's stumbled along through mainstream, with lots of support, for 6 years now and is finding it more and more difficult. What madwoman said about the flexibility of mainstream is certainly true for my nephew, but DS1 impulsiveness and sensory and behavioural difficulties are much more marked and the head has been honest that the only reasons he's still there are because he has a statement but mainly because she feels so strongly that she doesn't want to fail him. I do know that there's no way on earth he'd survive any MS comp.

Our kids really are the proverbial square pegs, aren't they?

madwomanintheattic Sat 29-Sep-12 02:42:26

Nagc use 'dual or multiple exceptionality' as well, so it would be worth using those search terms. Most of the stuff is out of the US, but the UK is getting on board as well.

Shellywelly1973 Sat 29-Sep-12 23:00:34

I had a full de brief from GOSH but no follow up appointments. We don't have a pediatrician. Ironically we don't even have contact with the E.P since transferring to the s.s as its an independent school.

Ive been reading twice exceptional since yesterday.
So far the information i have been reading doesn't seem to fit my ds IYSWIM!

The ss will not easily admit to not coping with ds. I spoke to his teacher on Friday evening, they are great for ringing and chatting, generally very good at all levels of communication. The teacher was saying' Oh dont worry we are only in the 3rd week of term etc'

The great thing about this school is they do recognise ds ability and within weeks of starting the school he was able to do maths work for Year 5 children. They have links with an independent mainstream school so when he gets older he can use their facilities and join as many or a few classes as he is chooses.

I will continue to read up about twice exceptional, more/new info never hurt anyone!

Thanks for the brilliant advice, the level of knowledge on here never fails to amaze me!!

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