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

[mysonben]

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.

Lingle- Is the "talkability" book the next step up from 'it takes two to talk" book?

It's really the next step up from "More than Words". I think your DH would find it acceptable as it says in the preface that it is not just for kids with ASD. I'm thinking it could help your DH stay with that feeling of closeness to his son if he had a sense of "I can do this to help him in the privacy of our own home".

A father's relationship with his son seems colour the whole of the son's life. If applying for a dx/statement now could estrange your DH from his son, then maybe give him a few more months before you take a joint decision?

Yes we have decided to wait until that next review with the paed in october, no need to run ahead until we have seen her again.

It is so hard at time with ds 'speech , when we try to get him to have a conversation with us using words we know he knows and we get nowhere! He just cannot engage in a 2 way conversation , it's almost as if he lacks the imagination of coming up with a reply!

Jeez - Excuse me but i am really sruggling with some of the rubbish on here quote "If applying for a dx / statement now could estrange your DH from his son then maybe give him a few more months bfore to take a joint decision"

What sort of DH are we discussing here because it sounds to me as though it's one who is totally in denial and unable to accept that his DS may not be 'perfect'.

Why should a book be more acceptable if it's "not just for kids with ASD". it makes ASD sound like some form of deadly illness / contagion! What sort of father is he if seeking a dx could estange him from his son? I find that quite outrageous! It's like saying his son is no longer 'perfect' so he will reject him!!!

All the DH is doing is delaying the ineviatable. If the child needs a Statement then failing to apply for an assessment for one is failing that child and that is educational negligence. That's why the Govt places a responsibility on schools / LEAs to IDENTIFY, assess and support SENs. Of course schools don't always do that because their masters are the LEA, and the LEA wants to spend as little as possible funding SENs so doesn't take kindly to schools actually approaching them with requests for assessment that may prove very expensive to the LEA.

In effect the LEA is the judge (does he need a Statement?) jury (how severe are his needs?) and executioner (funder). So SENs get overlooked by schols in order to spare their masters in the LEA the cost of Statements. So I would have very little confidence in any Head who told me that she couldn't understand why you would want a Statement.

And that's why Education law also gives the parents the right to apply directly to an LEA for an assessment of the need for a possible Statement.

Unfortunately the DH can stick his head in the sand up to his armpits but it won't change the fact that if your child is displaying difficuties for which he is not receiving the correct level of support because DH is in denial, or your child is the odd-ball in the playground bullied by other kids because of his obvious eccentricities and who has not been proactively taught the coping strategies he needs to deflect this negative bahviour, because DH would rather not accept there may be a problem - the whole situation will start to unravel very quickly at school.

And the longer you leave it the worse problems you are inflicting on that child.

I am still dealing with the fall-out caused to my son by a school and LEA who shirked their duty to my son. Their educational negligence caused him to be admitted to a psychaitric unit in his teens completely broken by bullying and a failure to identify and support his SENs. That's why I am so vehement on this subject. Had my son had the benefit of early intervention he may have had a very different outcome to the one he now faces with very litte prospect of indepndnece and still under psychiatric care in adulthood.

So DH should swallow his pride, admit his super sperm may not be all he thinks they're cracked up to me and start fulfilling his parental duty to his child.

Wetaugust- That 's a very strong post you wrote there. I can understand your point with regards to your boy.
I think Lingle was trying to say some parent (like my DH) have a harder time getting their head round with the SN issues of their child. It's only been 10 weeks since we have found out where the problems with ds lies ie: ASD. The first month Yes DH did bury his head in the sand up to his armpits but he is coming round slowly , i think he is scared and that's his way of dealing with things.
Regarding the statement we both feel that we want to wait until xmas , just a few more months to see how ds can cope a bit better in a few months once his speech will have improved a little more (hopefully!) i mean his problems with his ASD are mild , no major behaviours , sensory, sociable on his own terms! but thee issue with his speech is huge so it is bound to have an impact on his social skills , iykwim?
Besides he doesn't start reception until sep.2010 and he is happy at nursery for now anyway.
DH will go along with a formal dx and/or a statement as long as ds needs it and benefit from it. I think it' fair as not all children with asd or other SN have all the same needs anyway.

My ds sounds v. similar to your ds and is 3y8m. Visited the school that he should be going to today (say should as over subscribed and we live some distance away). It hit me what a different place it is from his cosy nursery.

He has been given a verbal dx of asperger/HFA (if infact any difference). I am trying to get a formal dx, so i can apply for funding. He enjoys nursery, but you can see that he struggles in forming friendships, has difficulties in certain areas, sounds are a huge problem, the help that amberflower described would help enormously.

Spoke to the school, and the head suggested getting a statement before coming would be a better course of action. And I would prefer this route although i think i might have a battle on my hands. But the impression i get is that live get difficult from 7-9y onwards and if no support provided things quickly unravel. He deserves the best he can get he is such a wonderful happy chappy.

I have applied for a little bit of support at the nursery, and they have been great already and you can see the changes in ds already, so i think it can only be a good thing. Am doing it without the dh input as although he does not disagree his just not prepared to get actively engaged.

Getting a dx does not change your son, but can change the support he might need to equip him with the tools to survive school.

To meet my ds at the mom, I do not think people would believe me that he is autistic, that what will make it so hard. My dad is asperger, that's why I am fighting for it (my dad does not know he is, but he is pretty classic).

sorry sounds like a rant, but i just feel passionately about early intervention.

Mysonben: The problem is that until you've had the full multi-disciplinary assessment of your son's needs that is undertaken as part of the 'Statementig process' then you can only guess what exactly your son's needs are.

@Mild' you will find is a term often bandied by 'professionals' to decsribe ASD. My own son was described as 'mild' and compared to a child with Kanners he probably is. But it's not al about Speech and Language, it's a hidden condition that manifests itself in many ways that you've probbaly never considered.

He may be getting SALT etc now - but did you know that SALT can be withdrawn at any time unless it is written into a statement the LEA is under no obligation to provide it?

I had an ex-DH who struggled to accept his son's dx. He thought it was akin to having a common cold -leave it a few weeks and he'll be better. He completely failed to acknowledge that it was a life-long condition (albeit) one where the difficulties could be alleviated by early intervention. Then he read Tony Attwoods's book and had his light-bulb momment. Not only did he 'admit' that his DS had Aspergers but also recognised the same indictors in himself. In fact it was probably his own Aspergers that prevented him from seeing the same condition in his son. You mentioned that you thought your younger brother may have had this when he was younger. That's something a Paed should have asked you - do you have any family members with strange / eccentric behaviour. It's an indictor that they lok for.

I stand by my advice that to delay seeking a Statement is to delay the time when you have a full assesment of your son's difficulties and what he requires to overcome them.

But I suppose your son is young enough to receive the help he needs. Mine failed to be dx'd during the dark ages when it had only just been accepted into the DSM IV.

Best wishes

i agree with mild i was told at the milder end etc yet his struggles socially and working on own terms were the biggest things to try and help him with before school his speech has come along great he'll talk to adults has no idea how to interract with children without the help im not willing to send him to school standing out so much from peers being a loner etc

yes his ASD is mild but asd is social communication disorder mild or not you see your ds has this and it doesnt clear itself up unfortunately with speech came alot of understanding but still inability to know how to interact that is ASD it doesnt come natural i think for any child to be to the best they can no help is too much help if it means they can function better working to own agenda is not accepted in school pre school have had to work so hard to get ds working to there agenda

all original problems are now gradually reducing but left alone they wouldnt as he has to learn all behaviour

I'm sorry to hear that your son didn't get the care he needed, WetAugust, really I am. I can feel how passionate you are on this subject and I respect that - I am passionate on two particular ethical issues myself and when people disagree it is hard not to scream.

Every child is different though (my family would have benefited from an Aspergers diagnosis for my brother, I believe, whereas a diagnosis for my DS1 would have been the wrong move), and every good father deserves to be listened to with respect.

also atypical speech is a problem to enter school without statement saying SALT my ds wont be able to have help working on his speech sounds im not willing again to allow this as his progress has been slow 12 weeks to get one sound

but also will allow his TA to help him be understood by others and will keep him interacting and socialising with them

in few years maybe you could say to dh if all the help comes now and all behaviour is learnt and worked on in few years may need no help at all as his ability to learn it all will grow as he does but also the other problem ds is near on at peers level now but speech wise in a yr if still hasnt improved hugely his going to stand out so much more than his peers this will need him having extra help

my dp took a good 6 mths to accept and still i think he doesn't really but his stopped saying he can be taught out of it to people i keep saying we don't know that we cant tell people he'll be ok he'll be taught out of it as we don't know his full struggles as yet when it comes to school

even with dp not wanting to believe it he always trusted i knew what ds needed as i do 90% of the care deal with pre school etc and has been 100% behind me on getting bubbla boy any help needed

give dh time but don't agree on saying he might not need it etc just at the moment he does need extra help other wise he'll take it that the help isn't needed and will keep dismissing the idea

ive read many of your posts with ds behaviour and it doesn't just go away and will need extra help yes its mild but yes its ASD and socially he will need help to interact as others do and getting them from not working to own agenda was long haul and not acceptable in school

i think your doing fab job but do make sure you really sit and talk to rpe school ask how it affect him how is he with other children this has also been long haul to help ds interact with other children

all these things are huge when starting school and will get worse if not worked on now

just weigh it up with all the right info really ask how its affecting him where they see his extra help is needed what does he do in day is it all own agenda does he play with other children

i should say ds always played alongside other children had no idea how to talk or play with them so would be the only one just standing and watching

everyone else could understand group instruction he had no idea it included him now he is able to follow small group instruction

now verbally put forward some of his needs would become frustrated and unsure how to do this before all the help

can now use children's names couldn't care less before had no desire to call there names activities were done daily him and 2 children all turn taking and prompted to use there names now he knows there names and has used them to call other children

shares lovely now used timer technique bubbla boy gets finds sam gets 5 as soon as ds knew it was his turn next his ability to share has been great

now say good morning unprompted more and goodbye

this was boy that went in not speaking to anyone apart from adult on his own term played on his own term and alone now plays with and alongside other children follows pre school routine with help of now and next

shares uses children name to get there attention speaks more with hello and goodmorning and goodbye walks with head up and no longer with head down and eye contact has improved hugely

oh and now helps at tidy up time in stead of running in circles does not help all the time but would never do it at all before he'd hide somewhere as it was group thing and this bothered him now his social and interaction skills have come along with help he now mingles in and helps he doesnt stand out so bad now and other children are taking notice of him and liking him

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.

mysonben

You must apply for the Statement and as soon as possible. I feel strongly about this because sticking head in sand does no-one any favours at all.

I agree with the premise of WetAugust's recent post.

Your son when in reception will likely be in a class of between 28 and 30. He won't be in a small group and certainly won't get any 1 to 1 without a Statement being in place. It is even doubtful whether SALT would continue without a Statement. Even with a Statement you may have to reject drafts and fight long and hard to get such provision. Without adequate support he will start failing.

If your son goes into Reception without a Statement that house of cards will come crashing down around you. It will be completely miserable time for you all and your son will become increasingly frustrated and angry at you out of school because he can just about cope within it. School is not just academic, its social as well and there are rules both written and unwritten.

You are your child's best and only advocates. No-one else is going to fight for his additional educational needs as well as you can - and should.

Hi for what it's worth I'm a primary school teacher - ages 4-11. If a child needs extra help it is far better for them to have a statement and the help and support it proivides for them.Although class teachers are trained to deal with special needs the teaching assistant assigned to your dc will have far more knowledge of the specific issues and far more time to devote to them. In my experience children whose parents have allowed them to be statemented have fared better in a mainstream class as they have the support they need. A statement is not given lightly by the school or the LA as it is expensive so if they feel you need it imo you should take it. The statement will be reviewed regularly so not a 'label' for life. Good luck x

Is the nursery a state nursery mysonben? I am just wondering what degree of liaison you could get between nursery and school as that kind of communication could be really important.

Also, do you have a relationship with the school yet? Any older children there/ideas about the head? This would all be good groundwork.

WetAugust, I feel for you and your son, that must be so desperately hard and I completely see why you are as passionate about the subject as you are. I see where both you and Attila are coming from. At the end of the day the interests of the child are paramount.

That said though I have huge sympathy and empathy with mysonben and her DH. For both her family and mine I think the DX is still very new and very raw; when it comes as a shock - for us we literally had no idea - it takes a little time to process everything in your mind and come round to working out what might be best and realise that your child hasn't changed, their needs are just going to be a bit different to what you thought they'd be when they were born.

So whilst I agree in principle with a lot of what has been said here I find the vehemence towards mysonben's DH a little unnerving; I suspect an awful lot of parents would have a similar reaction. I certainly did. Just because someone does not welcome a DX with open arms does not make them a bad parent, simply one who is in shock and needs time to get their head around things. And everyone needs to find a way of dealing with their situation and of course there is always going to be an element of shock, grief, disappointment, embarrassment, guilt, worry etc etc before you work your way through things in your mind.

But having said that we all come at this from different perspectives, and of course the perspective of someone with a much older child - who has either watched their miserable struggle due to lack of help OR witnessed fantastic progress because of it - is going to be far more realistic and pragmatic about the situation than those of us with pre-school or Reception age children. You are more experienced parents than we are, you have seen how the education system works (or doesn't ) and therefore have the benefit of hindsight. I can understand your frustration with the kind of ramblings we might come out with, but at the moment, we don't have the benefit of your experience, and that's part of what makes it so hard.

I guess what I am trying to say is I do think what has been said is right and the posts written with the best of intentions, but how parents and families feel about things and their individual emotions are all valid issues and shouldn't just be dismissed with 'well you need to get over it' kind of comments. We probably do - but it's not easy.

Well said amberflower

Hi amberflower

I would not disagree with any of what you have written. However, I would still stand by my premise that burying the head in the sand in a figurative sense does not do children with additional needs any favours whatsoever particularly when it comes to them attending school. There are many written and unwritten rules there with regards to the social side of things. And that does not just apply to the parents either. Any "difference" beyond their norm is noticed by other children and not all reception kids by any means act all nice and tolerant towards each other.

All I would ask of parents of much younger children (and my son is now in Junior school) is to bear in mind what sort of things can go wrong if their additional support needs are not fully met.

My post was written as a warning (and nothing else should be read into it) as to what can go wrong. I have seen it at first hand with both my son and others; I DO NOT want anyone to go through what I did during reception year because it was hell on
earth. The waggling finger at hometime directed at me by his teacher, the looks of pity from the other parents; its not nice to say the very least. As it was DH and I applied for his Statement that year and got it after some struggles. I am SO GLAD that we got that Statement; its done a power of good for him.

No-one else is better placed than the parents to act for their child's educational rights. As I keep saying you are your child's best - and only - advocate. You are their voice.

With best wishes

Attila

Lingle- Yes the nursery is a state run and is connected to the infant school on the same grounds ,different building. So it will help i suppose.

The trouble is because ds has such bad speech issue , dh looks at the problems and think most of it is speech related.
(It doesn't help with the area senco saying it is difficult at this stage to assess whether the behaviours like screaming for no or little apparent reason at nursery could be caused by sheer frustration due to his poor communication! )
Ok it is bound to have an impact on his socialising but speech doesn'r explain everything does it!

Now the senco has referred ds to an E.P .
I must speak again to ds' teacher as i'm unsure as to why that is .

At the moment i get the feeling not everyone agrees completely as to what the problem is with ds.

The paed : "mild" ASD + speech issue that do not help so she is doing a bit of 'let's wait and see how he will cope in the next few months when his speech improves.

The nursery staff : Some "odd" behaviours with routines, not much direct interaction with his peers, doesn't focus well on tasks unless it's of his interests, limited social skills.

The first SENCO : Again some behaviours that would suggest asd.

The second SENCO : Some behaviours like screaming and parralel play but no interactive play with others. Could be due to speech issues , unsure!?? Wants ds to see E.P.

SALT: has not agreed or disagreed with paed about asd , but says he has specific language impairment / semantic-prag. problems.

DH: Big speech issues, a bit odd at times ! DH hasn't made his mind up yet it seems.

Me : Yes ds is different , difficult at times with routines or rituals, speech is a big issue, but since the paed said ASD i looked up and tried to understand why she had said asd , and yes i agree ds does present with some symptoms/signs .

So now we are going to have yet another opinion soon or later by the E.P , what will she/he say...?

mysonben

i feel the same as your dh - i still hope my son will catch up/be same as peers despite evidence to contrary. but even if we're right the early intervention won't hurt and our kids are too young to feel labelled or singled out.

think you need to gently nudge your dh - i do sympathise with him tho.

Hi mysonben

The Ed Pysch will not be able to make any formal diagnosis (they are not qualified to do that particular role) but will give recommendations regarding his schooling. She may well recommend to the LEA that he has a statement for starting school. The EP is important to have on your side as this person is often instrumental in getting the LEA to decide whether or not to do a Statement. These people have clout!.

The SALT cannot make any formal diagnosis; the DX is down to the Paediatrician ultimately.

Thanks you all for your numerous replies to my thread, it really helps to get lots of opinions and advice.

Attila- yes i had it in my mind that the E.P was going to do a formal dx without our agreement shows how silly and paranoid i can get
So it will be intersting to see what she will do for ds in terms of help and statement?, i guess if she joins along with ds'teacher in saying he will need extra support for sure, then we will have to listen and DH will have to play ball in the end.

It's just a bit frustrating when all the people involved all agree that yes ds is not 'average', but don't all share the same opinions as to what is wrong or where the problem comes from, iyswim?

mysonben,

The EP will assess your son and see which centile he falls on in the different tasks. She will make suggestions about his school and should listen to your thoughts too.

Vig13- what od you mean by "which centile he falls on the different tasks"? Is it like a grading of some sort of his play, social skills, behaviours,...
Could you explain please. Has your dc had that done? Thanks