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DS ' nursery think ds might need statementing when he starts reception! Not sure...

(74 Posts)
mysonben Tue 30-Jun-09 23:51:05

DH and i have already talked about this and decided that considering ds ( verbal dx by a paed.)'s asd is relatively mild with regards to behaviours, sensory issues, and he not totally unsociable , i mean he can fonction relatively well at nursery, the main issue being his speech delay (SLI)for which he sees a salt.
But the nursery staff reckons he might find it hard at reception (in september 2010) because he is hard to engage in activities that isn't much of his interests, he doesn't focus well on what he is supposed to be doing, he stares into space a lot,... The nursery proposes that we wait up until xmas before deciding if he needs a statement or not.

Would you listen to the nursery and senco recommendations ? Or should we follow with our decision of not getting a formal dx and no statement neither.

mysonben Tue 30-Jun-09 23:53:20

OOOps i missed a bit at the begining of post , 'we have decided that considering his asd is mild , we were not going to go for a statement.

lagaanisace Tue 30-Jun-09 23:58:42

Maybe I don't understand all the issues, but I can only think of extra help as a good thing.

In our case, nursery and the SENCO have said they definitely need a statement in place. I suppose each case is different, but I'd be very worried about DS2 coping with school without the extra help. Certainly at this early age it can only be good, can't it?

Having said that, it's dizzying trying to make these sort of decisions as a lay person, isn't it?

mysonben Wed 01-Jul-09 00:09:20

Yep it is. We only want help for ds if we feel that he really needs it, and as we are not with him in the nursery setting we have to rely on what they say i suppose.
Dh is slowly accepting the fact that ds has asd and some issues, but he is adamant he will not allow for him to have a formal assement because he doesn't want him labelled.

AttilaTheMeerkat Wed 01-Jul-09 07:19:51

mysonben,

re your comments:-

"Dh is slowly accepting the fact that ds has asd and some issues, but he is adamant he will not allow for him to have a formal assement because he doesn't want him labelled"

Your son has already been "labelled" by the paed albeit verbally. Your H is burying his head in the sand here; this is about your son and starting school. Its about yout son here and his best interests, not about him!!!. He needs to see a "label" as a signpost for getting more help; its not a stigma. He needs to get past that and sharpish.

I would take heed of what the nursery staff are saying here; infants school anyway can be a tough ol' game especially to children who come across as at all "different" to their peers. Even children with "mild" ASD can find school life very hard indeed and these problems can magnify the further up they progress through the school system. He may well bottle up all his frustrations as well re school and then take out all that on you after school. He may also find reception very difficult without some support behind him and you may well get called in on a regular basis to discuss him (have experienced that myself, would not wish that on anyone). Some of his peers could well pick on him or comment for being "different" to them.

I would personally not wait until Christmas to decide re the Statement; infact I would apply for one now. You are your child's best - and only advocate.

Quite beside from anything else early intervention is vitally important; if he does have a Statement for reception it will help him as he will receive extra support in class. It is better for him to have a Statement early rather than say later on in Y2.

lingle Wed 01-Jul-09 09:04:40

Hi mysonben,

Ds2 will start school in Sept. 2010 and we are also in the "statement or no statement" dilemma. If we don't apply for a statement we won't go for a dx either iyswim.
Oddly the pressure for us is from SALT/paed whereas school have said "let's decide in January" (and headmistresses even said to me on the playground "I don't know why you'd want to").

I'd be very interested in talking about it with you and your DH as we are also at the mild end (though our language delay is worse, I suspect)and Ds2 will be 5.0 when he starts. But now I must go to a work meeting!!!!! Will watch thread with interest.

One of my issues is that "Early Intervention" sounds terribly impressive but what does it actually boil down to?
Maybe we should both get the forms and have a peek.

troutpout Wed 01-Jul-09 09:17:29

Noone can tell you the answer to this one ...it's your call.You have to weigh up what is best for your boy. Perhaps you can just leave it for a bit . Seems a shame to miss out on such an early advantage though?
Particularly if you are going to be at the same point further down the line anyway?.
It wasn't picked up with my boy at all....noone could see it (apart from me). If i could change anything ...it would be that he had gotten help and a dx earlier.

Perhaps your husband just needs more time to come to terms with it. If you can access something like a 'help' course (run by the nas) he might be able to see a way forward with this a bit more. I booked dh on a casadt course in the end...it was a turning point for us.

I do agree with Atilla. Particularly if nursery have already said that extra support is indeed needed....and you already have professionals pushing your boys case.

I always say this.-
I would much rather my son have the right label...rather than the ones that my boy got (from teachers and peers alike) before he was protected by a dx

lazy,weird,odd,dreamworld boy,stupid,freak,clumsy,immature,behind,(i could go on and on sad)

The playground (particularly pick up time) was a tough place for me... let alone him!

There was a boy in ds's class who had a dx of autism and a statement from the word go. I was envious of his experience at school

If your son hadn't been picked up at all and it was just a 'feeling' by you...and noone had said anything about support then i can understand it a bit more

Why would your husband want to deny your boy this?(i think i know why btw...i had a similar struggle with my dh and pils). As mums we bang it around in our head and see things for a lot longer don't we? smile I didn't have the school in my corner as they couldn't/wouldn't see what the problem was...( angry but were quite willing to give some of the labels listed above! hmm).

Ds could 'pass' for nt quite easily at 4...plus his behaviour was always very good.This was his downfall really.

I don't know tbh. Perhaps you can just wing it and see.... See how he gets on.

But if it were me and i had already been told that he needed support..then i would grab this opportunity with both hands

Sorry...that wasn't any advice at all was it! grin

r3dh3d Wed 01-Jul-09 09:25:08

It's a toughie. This stage is a lot easier if you have a more "severe" child - there's no decision to take iyswim.

Re: DH. DH denial is almost as common as grandparent denial. And grandparent denial seems to happen in about 99% of ASD cases.

Re: labelling - well he may get a label anyway. He may be the "naughty" child or the "weird" child or the "mean" child. Because if he doesn't cope with the pressure of school, that can come out in behaviours. If you have a diagnosis you have a chance of pushing the school to treat these appropriately which means he will cope better and the behaviour will diminish - allowing him to cope better socially which could well be his Big Deal with school.

Re: what nursery says v what school will say. Again, tricky. Schools are under huge pressure from LEAs not to statement, because of the cost of proper provision. So you may quite possibly get Nursery saying "I'd advise a statement" and when you get to school they say "oh he doesn't need one" and it may take years of failing at school before they capitulate - meanwhile the LEA have saved £££. At least nursery's view here is unbiased - it's no skin off their nose either way.

I think the only thing you can do is try to take as unbiased a decision as possible. Go into nursery and talk through what they think the problems are in detail. Ask if you can observe what they are seeing, and try to project that into a school environment. And then make your mind up based on that, and act accordingly. I'm afraid I wouldn't take any notice at all of your DH's opinion. I don't mean he is necessarily wrong, I just mean that he has too much emotionally invested in there being no real problem, for his opinion to be objective; if he is right it will be by chance rather than by observation iyswim.

bubblagirl Wed 01-Jul-09 09:36:03

when you say mild ASD would that be like HFA as ds has HFA and isnt really severe but has had extra problems arise and will need help at school to socialise and engage in activity etc this is all expected behaviour when in school

ds can do really well with the support but without a statement the support cannot be given in helping him speak to others speak his needs engage in activity perform as expected like the other children dress himself in pe, ask to go to the toilet, sit and listen at story time and considering reception is based around play he needs structure and help to play with others

i personally could not send him in without the support as it will be hard and frustrating for him which will make things worse as he will be more withdrawn as cannot freely speak to others and cannot focus on set tasks so will not meet curriculum in any of these areas

to be honest your ds has always sounded like my ds at home his a different child i stayed at pre school hidden in kitchen to witness how he copes and was heartbreaking he didnt cope but at home can do near on everything doesnt need routine etc is happy funny little boy

in pre school setting it becomes too much to handle its the unknown he doesn't know what expected form what nursery is saying your ds is the same and could do with extra help to learn how to interact etc to engage in said tasks ,

i'm just wandering i dont want to sound patronising but you always mention mild ASD have you accepted he has ASD as in pre school his ASD appears more obvious like my ds and without the help will always be way behind peers as not learning how to act without the support {dont mean to sound mean but i hid in nursery to see how ds acted and was shocked as not same as at home}

i'll give you run down of ds it is hard when at home there one person in pre school another but when i witnessed how much my ds struggled broke my heart i had to accept he needed more help and im glad i did

he gets taught how to play and interact a yr ago he was hard to engage couldn't and wouldn't talk to other children worked to own agenda

now he with help will play with other children talk to other children and is doing this more independently as well now works on tasks given by use of now and next so he can see what expected and gets to choose reward task for doing as they ask

behaviourally he is fine ASD is social and communication problems and beings these are the main things we need in life any support given should be so they can stay at peers levels if possible mild autism or HFA children have the ability to learn everything they need to know in life and ds now is more sociable doesn't willingly go up to children as much unless its physical activity but can with help interact and speak do as asked and all this wouldn't be possible without he help he has received from pre school 1-1 his a different child

a label isn't necessary a bad thing and not everyone at school needs to know your ds has a label only few people know about my ds as he doesn't stand out but i know he needs the help and i want him to have best out of life and fit in as much as possible and i know this comes from extra help the people that do know about my ds dont judge him they all love him

also you cannot expect a school to treat your child any different from other children without a dx if you want extra help for his needs then a dx will allow this so if school didnt do something and it riles you thinking but they should have done this as he may have ASD they cannot treat a child any differently if there is no written statement to say his needs are different

sorry to go on but i do believe the pre school and he sounds so like my ds who has improved hugely with help

bubblagirl Wed 01-Jul-09 09:43:41

sorry if a sound like a bossy judgey pants but your ds i see my ds in him and to see what huge progress my ds has made how more independent he is and how his speech has come on and talking to other children

i may not have expressed the mild and have you accepted what i meant was yes it has been mentioned as mild but have you accepted his needs are different away from home

i will say if you can hide in pre school and witness how he is and how hard they work to engage him this may like me make you understand it is like having 2 children my ds struggled i cried it was so hard to see that wasnt my ds but it was made my mind up from that day and so pleased i did as different child now his not on his own in corner his in with the other children and engaging all from early intervention

AttilaTheMeerkat Wed 01-Jul-09 10:20:28

mysonben,

I would agree with the other replies here.

My son has had a Statement for his learning difficulties since Y1. I am ^SO BLOODY GLAD^ (apologies for shouting here) that he has had this support because it has done him a power of good and I am all the happier for it. With that Statement came some understanding from the school and I was not called in seemingly every week to discuss what DS had or had not done (as occured with his reception teacher who had not fully understood his additional needs at all). I would not want anyone to go through what I did in reception; all those parents' eyes on you at pick up time when you were summonsed
to the front.

I have also seen some of his peers who have struggled badly with their 3rs primarily because their additional needs have not been met by school. Also school is not just academic, its the social side of it and conforming to rules also that they have to face daily.

Its your decision but if they're not just saying these things to you for the sake of it. I would therefore pay close heed to what they are saying.

vjg13 Wed 01-Jul-09 10:52:31

mysonben,

I would start the statementing process as soon as possible too for the reasons that have been described. Difficulties that may seem mild now may seem less so in a school environment and the nursery believe he will need extra support.

Your son receives SALT now and in many areas the pre school provision for that is much better than the school age provision. The only way of ensuring your son will receive any SALT once he is in school is to have it specified in a statement.

If you begin this process now you will have lots of time to reject different drafts of the statement and ensure your son will receive the correct additional support he may need.

amberflower Wed 01-Jul-09 13:06:08

Hi mysonben

This is a really difficult one...I sympathise hugely. I have had concerns about my DS's ASD DX as you may be aware from my other posts. As others have said it is a decision only you and DH can make, but it is a hard one, particularly when the needs are not so extreme that they are immediately obvious and 'visible'.

I have a similar situation to you in that we have no issues with DS outside of school - probably similar to bubblagirl too in that respect - never felt he was in any way 'different', all milestones hit, no language, sleep or behavioural problems, no ritualistic behaviour, shy with new people but no real issues with socialisation, no more food fussiness than the average 4 year old, doesn't always seem to listen to what you say but no more so than his peers do with their parents, is affectionate and loving and articulate and happy, etc etc etc etc....

So you look at this child you have known from birth, and then you listen to what education professionals are telling you, and then you kind of go 'are we talking about the same child here?' hmm When it's not 'clear cut' as such you can't helping wondering - will we do more harm than good by accepting DX and applying for statement? Because although I completely agree, the DX is a really good thing if it gets them any help they need, it is hard not to feel that it's a double edged sword. It IS a signpost to getting help - of course it is, and that is how you have to think about it - but you still worry about accepting a 'label' and whether that might affect your child in an adverse (as well as a positive) way. There's nothing wrong with that, you're only human.

BUT at the same time the ONLY real issue here is your child, and his needs, and whether he is going to struggle at school (which after all is going to be a huge part of his life for the rest of his childhood). So if the help is going to be of benefit...and you can see where his nursery are coming from...it might be worth applying for the statement. From what I can gather it seems to be a long and painful process and maybe the earlier you get started the better?

Also, at the end of the day, you don't have to tell anyone what you are doing; it's a matter for you and DH to decide on DS's behalf, and to be honest if issues only affect him at school then only school need to know!

For us we have accepted, like bubblagirl, that our DS is struggling at school in a way he just doesn't at home or in other settings such as his swimming lessons or in the park or softplay and so on. I go into his class once a week as a mum helper, and I do see where his teachers are coming from - he is far less confident and relaxed than he is outside of school, he's not finding school life particularly easy, he IS struggling massively with fine motor stuff and in a more minor way with concentration and peer relationships. Therefore, I can absolutely see that he will benefit from additional support, and so whilst we are requesting a second opinion on the ASD DX we have made it very very clear to all the professionals involved that we do see that DS has some individual needs and we have stressed how grateful we are for the proposed help for him.

Lingle made the point about what help does actually materialise from this magical 'early intervention' buzzword? Well, your DS sounds very, VERY similar to mine at nursery, from what you describe in your first post, and this is the help he is now getting in reception following his formal assessment and DX:

* 5 x 45 minute sessions of external OT where he basically practises pencil grip, scissor cutting and concentration skills - not rocket science but has helped massively with his self esteem and I can already see an improvement after just 3 of those 5 sessions

* 1 x 20 minute OT session per week within school (run by SENCO) again practising fine motor and concentration skills with others in Reception year

* he has a special cushion to sit on during carpet sessions and a 'fiddle toy' to help him concentrate during those sessions

* he has visual 'cue cards' to help him decide on activities during 'choosing' times - he really struggled with the 'free flow' aspect of reception and tended to wander about aimlessly during in-class free play sessions, although both class teacher and SENCO think he will be a lot happier in Y1 which is more structured

* a SALT will visit the school to advise on socialisation skills training but from what I gather from SENCO he won't get regular external SALT as such -when he was formally assessed his expressive/receptive language skills were within the normal range for age. But the SALT will advise the SENCO on strategies and DS will most likely participate in a school-run group for children who struggle a bit socially for whatever reason - lots of games etc to help them learn how to participate happily in the social side of school life, making friends etc

* following the DX I put DS on the 'eye-q' strawberry chew fish oil supplements - and I have to say within two weeks of doing this his teacher was enthusing about the huge improvement in his concentration skills! So I am definitely a converted fan of those smile

* depending on how fine motor and concentration skills improve the school might apply for funding for 5 hours per week 1-1 support for DS for Y1, basically for literacy - story writing and so on. At this stage this is very much a MIGHT, and depends how things go, but obviously with the assessment done the school are more likely to get the funding if it transpires they need it.

However I should say that DS is NOT statemented - he's on school action plus - and school have said he doesn't need a statement and in their opinion never will need a statement because he will never require full time 1-1. Now obviously this may well just be the rule of the LEA we fall under - I am sure I've read about others who have statements for less than fulltime 1-1 help. So if your nursery are recommending statement for your DS, that could just be the way your LEA does things.

Blimey this is a long post....apologies.... but I hope it helps in terms of showing you the kind of help that your DS might get...and also to help you feel that you are not the only one feeling uneasy with a DX when the issues are not vividly apparent to you as parents. Good luck.

troutpout Wed 01-Jul-09 13:13:18

I should add that ds is not statemented either. He has a formal dx and funding for 15 hours per week.

AttilaTheMeerkat Wed 01-Jul-09 14:50:26

Hi Amberflower,

Re your comment:-

"However I should say that DS is NOT statemented - he's on school action plus - and school have said he doesn't need a statement and in their opinion never will need a statement because he will never require full time 1-1. Now obviously this may well just be the rule of the LEA we fall under - I am sure I've read about others who have statements for less than fulltime 1-1 help".

Don't buy what the school says here!. Its not down to them to determine whether he needs a statement or not. My son has a statement and he does not have full time one to one at all. Also such blanket policies like this are illegal and the LEAs cannot plead ignorance of the law here. School Action plus unlike a Statement is not legally binding and the goalposts can change very easily.

SALT can and should be included also in Part 2 as well as 3 in the Statement document.

mysonben Wed 01-Jul-09 15:49:57

Thank you so much ladies . lots of advice here.

I think what we see of ds' behaviours here at home is a different ball game at nursery.
His teacher and senco say he is awkward socially , he wants to interact with others but doesn't always know how to and go about it in the wrong way ,so he wil approach and make a lot of shouting vocal stims instead of saying 'hello i want to play!', or he go along with the others and observe them a lot, copies their gestures and sounds, he hates been crowded and shouts 'go away' a lot , he snatches toys and things and stares or laughs when the other kids complain or cry. HE is very possessive of things , cannot share. When in sitting activities he loses interest very quickly , he is very 'spacey' into his own bubble and loses track of what is expected of him, he is difficult to engage into a diversity of activities ,he is very selective of activities and prefers to play alone with cars and trains,...
He has much difficulties expressing himself and understanding what is said to him and his speech is very hard to understand too ( doesn't say his consonants , everything is 'n')
THis is what ds 'behaviours are like at nursery. But on a positive side he improves on all aspects when the nursery isn't so busy , ie : the smaller the group the better he is. Obviously if he still acts like this when he starts school then it will be hard for him.

Lingle- yes what is exactly 'early intervention'??? It woudn't hurt to find out.

Bubblagirl- in my eyes 'mild' asd for my ds means that he can talk and understand language (level of a 2 1/2 y old approx. he is 3y 8 m), he is sociable to a certain extent like he will have joint attention with adults for short periods, and interact with his peers but following his own agenda wink, he shows some flexibility for his rituals and routines which aren't many anyway, he has few bad behaviours issues , no biting, ... the same goes for sensory issues apart from hypersensitive to certain noises where he will cover his ears and get upset ,and a couple of touch and food issues it's not too bad in that area.
He struggles most in busy , noisy , large groups , when he is not sure what is expected of him so he withdrawn and loses the eye contact. And finally he does show affection but not overly kisses or does bear like hugs.

I have observed him before at nursery and i left heart broken with a ball in my throat and stomach , because although he was happy there i could see how different he was on many aspects , comparison to his peers is the biggest eye opener i think! I will push DH to go and watch him there , that will 'speak ' to him better than any book could i think.

So yes he is a bit odd at times and ok he is speech delayed and doesn't mix in the same way as other kids do but it isn't in your face , the OMG! there is something terribly wrong with that child IYSWIM? It's more like a lot of little things that when you string them together show that he is not your average NT kid.

I think we will still want to wait until after xmas to take a final decision regarding statementing, he doesn't start reception for another year. We just want to give him a chance for a bit longer to see if he can improve and cope better at nursery in the new term after summer.

Phewww a long post! grin

bubblagirl Wed 01-Jul-09 16:00:50

we started our statement process in dec ready for the sept

your ds just sound so like mine when you describe him ds uses g and k in place of start and end of word gaggy, nunny,

i think all help even if needs minimum hours will help ensure that some support is there to help settle to new routine etc my ds can cope outside of pre school in school setting he falls to pieces too much going on doesn't know what to do will play and interact with children on 1-1 basis the larger the group he clams up and backs off

i was only asking about mild ASD as ds is HFA didnt know if this was mild or different iyswim didnt know if there was such a thing as just mild and how the child was to get that dx ds is at the milder end of spectrum in ways of learning and understanding but socially really affected so i want all the help possible so the improvements made will continue

mysonben Wed 01-Jul-09 16:11:03

A quick word about DH . I think men have a harder time fully accepting and understanding the SN of our children wink
DH has come a long way since april , when he was sooo angry with the paed for even saying the "A" word !!! He wouldn't hear it or say it Autism was a tabbo word for him. Now he can and will talk and listen and agree that ds does show some symptoms/signs that indicate the autistic spectrum. So that's big progress for DH ! I think that DH is scared by it all , he is scared of the 'label' and of what it means for ds and his future. He said to me not long ago' i still hope that one day ds will be just 'normal' ...maybe i'm in denial!'
DH is ex-army and doesn't look at differences with an open mind , he likes 'conformity and the norme' wink

mysonben Wed 01-Jul-09 16:19:56

Bubblagirl - ds had a verbal dx followed by a written report of his behaviours,... the report mention ASD and a review in the autumn to discuss the need for an autistic assement for a formal dx.
I think the paed said 'mild' because she couldn't/wouldn't say HFA or another more specific dx at that moment in time.
She did say ds is on the very able end of the spectrum. ( not that he is a genius though! grin) i think she meant he can fonction relatively well without too much support.

bubblagirl Wed 01-Jul-09 16:23:37

dp was like this and kept telling everyone that he can be taught out of it if only it was that easy

but now he agrees that we don't know how he'll be in years to come but we shall give him all help needed to be able to be independent again ds isn't completely obvious but we accept him for him and want all help to make sure bubbla boy doesn't fall behind his peers to much and can fit in when starting school his blending better now and its only happened from the extra support

we know his mild compared to some children but his not without his struggles and he can with help over come or manage them better and for him thats great his more at ease he is able to learn and interract and be more social communicate his needs the improvements made is fab

we did the whole its only mild to everyone when we couldn't accept that he was autistic still doubting it etc but now we just say he has autism he is who he is and im not ashamed of that and we've seen the progress made by him and again wouldn't have happened without the help

just give your dh time took my dp a good yr to fully accept he hasn't told any of his friends etc he doesn't like admitting it but his not ashamed just finds it hard

bubblagirl Wed 01-Jul-09 16:24:17

x post with you there

bubblagirl Wed 01-Jul-09 16:25:47

i am heard saying at times saying its at the milder end when you see some facial expressions of mention of autism i do try to stop myself now though

bubblagirl Wed 01-Jul-09 16:26:59

oh and ds is maths whizz his 4 and can do 10 plus 10 and obviously numbers lower

troutpout Wed 01-Jul-09 16:30:41

It's worth noting that if he finds it hard to 'fit' in when little...it is likely to get harder as his peers social interactions become more subtle as they get older.

Ds actually didn't really stand out much at all at 4 ... but by 7/8 he very much did.

lingle Wed 01-Jul-09 21:51:29

Interesting to see your list of inputs Amberflower. We are on school action plus as well.

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