I am not sure I want to get my DD 'disgnosed' or have a statement for her

[brandysoakedbitch]

Honestly I just cannot see the point and so worried about labelling her. She has had probs from very early on - variously diagnosed as speech and language delay, receptive lang disorder - you name it really but no one has ever made a commitment to what it actually is that is a problem.

I took her and my older DD to see a private Ed Psych and apart from dyslexia, dyspraxia. attention deficit she also thinks she has asd - having read a lot about it subsequently and knowing her development thus far I am minded to agree. As she gets older and older she stands out more (she is 8) and going into juniors have proved hard for her. She is an outsider but when i discussed her perhaps going to a special school this idea was dismissed by the school senco and by the school ed psych because they think it would not be right for her - she is very behaved and her main problem at school is not being able to fit in - going to a spcial school will make no odds to that.

So I cannot see the point of statementing her - she is already on school action plus and gets a huge amount of input - a statement will not make her fit in and that is what she needs to do if she is going to succeed in traditional terms

The school did suggest I get her asd diagnosed but honestly what is the point with this? I know it makes things easier for them in a sense but I feel like it will pigeon hole her for her life.

Am I being an idiot about this? I am just unwilling to saddle her with an autism label forever and have people judge her on that. I am also really worried about how asd could affect her long term mental health but want to remain open minded about it.

Sorry for the rant - having a big worry about it all

I agree about the future but at least financially we have made arrangements for her - I would certainly never rely on the local authorities for help on that score I can tell you re. housing and such. I do feel that if I need to change tack in the future then I will - If if suits us and her I will get her a diagnosis (she already has a private one anyway) - I just don't feel now that it is worth it. I do not want her flagged up with the authorities now on the off chance she might need them in the long term. To be clear I do not keep her issues secret from anyone (as if i could anyway)

She already has DLA and I will assume that should stay in place (again if that changes and she needs the money then I i'll re-look at this when the time comes) - I just don't feel that right now is the time as it adds nothing to her life at all. Getting a diagnosis can be done at any time in the future she is still who she is and ill still present with the same issues. I would not cut off my nose to spite my face I can assure you, if i felt she had more to gain then I would do it.

I reserve the right to change my mind, this is how I feel now about the person she is now, that may change and I may have to change my mind but right now, what does it add to her life? Just another label that she doesn't really fit into and I would rather people take her as they find her.

Trust me hen I tell you this has been an ongoing situation for a very long time - there is no school for her. The majority of the children in the particular special school in our area have behavioural problems - the ed psych expressly told me that she thought that this sort of environment would be damaging for her to be in. She needs to be quieter and more peaceful and to spend more time being creative. The thing is people here have mentioned boys with ASD, it is very very different for girls and frankly our local provision is not kitted up to deal with that. I have the means to give her hat I think she needs so why is that seen as a bad thing - e do not have a tight family bubble, we have a big family, lots of people around us and I have no intention of locking her away, there are other things she can do like extra curricular stuff - school is not the be all and end all of socialisation - it is easier but not everything.

I have visited several provisions; special schools and a school with a bolt on unit too, including one which is run by a charity specialising in communication difficulties - they were lovely as it happens but it would mean her being residential and I am not prepared to do that. We have looked at moving area but could not find a solution for all our other children as well - Home Ed seems to be the best way and kindest solution to a wide ranging problem.

A behavioural school would certainly not be at all suitable for your DD. Am glad to read the EP dismissed that option but has seemingly not offered you anything much else.

What extra curricular stuff does she like doing?. Have you researched HE in the area to which you are moving to?. The website Education Otherwise has a good SEN section on HE too which you may want to read.

The future is certainly something to be considered also in terms of how DD is cared for be it within the family or by an outside residential service. Services now are patchy to say the very least, goodness alone knows what it will be like in say a decade. Many local authorities now are more than happy for families to carry such a financial load now.

My best wishes to you for the rest of your pg.

Do you know I think it is the future that gives me the willies a bit that people with issues of one kind or another ill be sort of herded into group care and facility (rather like they would have us do to our elderly) - I think with a bit label like autism (and we cannot deny it is a big label) she might get looked at as an autistic first and a person second. She has not been denied any services thus far, in fact up until this point everyone has been very reticent to name anything she has wrong in case they have to provide for her. I had to fight tooth and nail in our home county for even basic speech therapy (she hardly spoke at all until she was 4 and everyone seemed very relaxed about it!) which did fuck all as it goes - but I moved her school into the next county and they have been able to do a lot more for her - simply their provision is better because they have more money.

I am happy for the issues she experiences like receptive lang disorder etc etc to be looked after - so essentially the issues that present themselves to be acknowledged just not that big old label that would cloud people's vision of the person she is.

I think Atilla there is nothing else close enough that DD would not have to be resident outside our home (she is only just 8) and that is just not an option not at all. Any educational benefit would be outweighed by her having to be without her siblings and parents. This would mark her out as completely different from the other children and cannot see how that is good for her.

All I am trying to do is make a silk purse from a sows ear really.

Are there any MLD special schools in your area or neighbouring LEAs? My daughter attended a MS school with a resource unit and despite it being ideal on paper, the reality was very different and it was far from that.

She is now secondary school age and attends a MLD non-maintained school (she is actually more SLD) in a different authority to where we live. I think the main difference for her is that she has a proper peer group and friends. She also has been able to adjust to not having 1 to 1 which actually took away independence skills from her.

I can appreciate that you feel your daughter's education would not benefit from a statement at this stage but the current school could withdraw all her support (say with a management change) and you would be in a vulnerable position. If you did hear of a good special school she would need a statement to get a place there too.

I think the gap really shows when kids are in juniour school and the majority become much more savvy. My daughter was always very babied by kids her own age in MS.

vjg - there is not reason her provision would be withdrawn, the head had recently changed and she has gone into juniors and it has remained the same - I am very on top of it ith regards to what they offer her - politely insistent is my way (and never taking no for an answer

If something changes and it suits her then I will change and get her a statement (if we are going to stay in mainstream)

Without meaning to sound bleak, your circumstances could change very suddenly. Have you made contingency plans for your dd should, eg, something bad happen to you and your dh so that you are no longer around to care for her? Who would the be responsible for caring for her and could they cope with this without the backup of a formal diagnosis? Even if your dd obviously does have an asd, I doubt the process of getting her a diagnosis is a quick formality if to date you've kept everything off her NHS records. And if she does suffer from mental health problems later on and ends up in the NHS system for that, it would probably help anyone dealing with those issues to be made aware that she had a pre-existing autistic spectrum disorder, so as to avoid accidental misdiagnosis of something else...

I absolutely see that not getting an 'official' dx works for where you are now. But things can change extremely quickly. For example, school may have no intention of changing their support, but their budget could be slashed next year. Or, say, three of the fantastic staff who work with your DS could leave next term, leaving no trained staff and suddenly a HT could be going 'hmmm, look at my bottom line, if I don't replace those TAs I could save £x and still look after my statmented children'. A statement is the only thing that gives your DS legal protection. And even if you have a private dx, it doesn't follow that you would get an NHS one. And you certainly wouldn't get it quickly enough for it not to have an impact.

Do you see what I mean? Its not about the now, it's about the what ifs?

To be clear, not everything has been kept off her NHS record - the overwhelming majority of stuff has been through that route - the NHS have previously shown absolutely no interest in getting any sort of diagnosis - when she was 4 they told me she would be fine - she couldn't speak! They have always been terribly vague - I have in the past asked repeatedly and she was too young/let's wait a term... etc etc - I flagged up problems hen she was under 6 months! The net result is that she has a catalogue of things to her name re. comms difficulties, speech delays etc just not ASD (which I assume is the underlying cause but could also be alongside these problems). So essentially she is treated for the things that affect her and that would not change with a diagnosis (the SENCO told me this)

What I find fascinating is that someone privately has diagnosed it but all the input she has received no one has ever ventured a diagnosis - they can't all be shit, it must be about finance surely. If I do get it diagnosed I will go back to private resources because then I know they have no axe to grind iykwim. As soon as I mentioned the ASD to the SENCO she told me that she has alays assumed that was the issue.

And yes I have made plans for all my children in the event of our deaths. Don't all parents? My older DD is chronically ill so I have to think ahead but honestly I do not live my life worrying about every possible eventuality - my life is based on the probable not the possible - the chances of us both dying whilst the children is very slim so yes I have a plan (don't we all?) but it is not very very detailed. I also have to babies - I cannot really plan too far ahead for them as I have no idea ho they will turn out and hat help they may or may not need.

Again, there is a diagnosis if it were needed - and surely this carries as much eight as an NHS one, the psych is similarly qualified (maybe a bit more). And really I don't even think about if there are going to be 3 staff leaving - e might not be at the school so no I don't worry about them. If that does happen I might change my opinion then but as it stands there is no point.

And my point is I do not think a statement will currently change anything for my DD - it cannot change the environment she is in and make her fit in so surely it is best I take things into my on hands so at least I know she is safe and happy.

oh i don't know tbh (about the nhs and dx). if you were to request her docs under foi i'm pretty sure the dx would be on there.

dd2 has cp and until i sat in the consultants's office and refused to move without a label instead of a list of issues, they hadn't bothered to tell me.

sometimes i think they just assume you know. and so it goes unsaid - the elephant in the room thing. i know when i told our (many and varied) therapists that we had the dx, they were much relieved that they could speak about it frankly. it was blatantly obvious what they were treating (and i had dx myself 18 mos previously) but for some reason the consultant was being coy.

it had been on her notes for about 22 mos. the first two months she was just an hie baby.

Well, if I were you, I'd probably leave it for the time being, too. It sounds as though you've banged your head against an NHS brick wall for long enough, they at least have the list of your dd's symptoms and you don't need a statement to get the help you are already getting and don't need a statement to home educate and you already know what the problem is, so no need for validation or help in understanding your dd or anything else that an ASD diagnosis would bring...

Yes that's it - it really is about, does this add to her life? and I keep coming up with no it does not. I don't need help in understanding her needs and everyone around her has just shown her compassion and kindness (school wise I mean) - trust me when I tell you if there was some magic bullet that would solve all her schooling issues by having a statement or something I would do it which is why I will not shut the door and say never to anything. This is for now. She is a subtle beast, I think ASD in girls is a difficult thing, it does not manifest itself the same as in boys and presents less. I do think that people have an understanding (albeit quite inaccurate sometimes) of classic behaviours of people with ASD, Aspergers and the like and almost none of it applies to my DD. I do think popular perceptions of ASD are male focussed and I don't want people to judge her before they have met her iykwim.

I think the best thing for us to do is to try home ed - I think the benefits or indeed drawbacks will be evident and I am not stubborn or proud, if I am wrong then I will have to rethink. Nothing is forever but her sweetness and naivety are very precious, she needs a gentle solution. Slapping her in a state secondary even with a statement is not the answer. I might feel differently if she matures a bit but currently I just cannot see it.

Rabbitstew - that is the thing I did try for ages and ages to get someone to throw their hat in the ring and none of them would do it - I know now I will have to push for a dx, it is up to me to take her back and have her referred etc, no-one is showing particular concern and are just dealing with the issues as they present themselves. However I may go along to a local group for parents of children with ASD, it might help me get some perspective and maybe I will find out about something that I have missed or some local resource that could help.

And my point is I do not think a statement will currently change anything for my DD - it cannot change the environment she is in and make her fit in

Coming to this thread a bit late, and I'm not going to give any opinion about what you should or shouldn't do.

But did want to point out that actually a statement can change things for your dd in a school - that is entirely the purpose of them: if the environment, teaching method, or curriculum need adapting and differentiating, a statement should ensure that this happens. And if the appropriate support is provided through a statement (eg adequate education and support for social communicaiton difficulties) a statement can/should also make a difference to how she "fits in".

Just somehting to bear in mind for future if you decide to put her back into the school system. A statement, if it's right, is crucially important to a child's success.