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Got a diagnosis, now help/ advice on getting support.

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Dear all,


Some of you may of read my thread on the difficult times thread and I want to thank - you all so much for your support and advice.


Those who haven't, here it is in a nutshell. DD came home four years ago, aged four. We've had a lot of problems with her and finally yesterday she was diagnosed with adhd. She will be taking meds but from next week onwards as school have recommended that she doesn't take them whilst she is on a school residential at the start of next week. We are concerned about side affects, so we have decided to start them when she is back home and we can watch her and support her.


I have spoken to her school, (who aren't the most supportive on any issues, it took them 3 years to write a referral to paediatrics, but liked to moan a lot) and have asked what help she will be getting. The Senco's response was that she might not need any and may not go on the SEN register. They are fully aware of DD being adopted too.


So I feel, that unfortunately another battle with school is going to start. Any advise what to ask for/ say etc?? I have contacted the local Sendias service and plan to join a local support group for some TLC.


Thank - you all so much.


Swimchic


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Loathe to say it but my son's ADHD diagnosis meant nothing to his then school. There still seems to be a lot of scepticism about the diagnosis and some people still insist that it's just naughty kids! My son went on to be excluded permanently from mainstream by the age of 6, for which I am eternally grateful!


If school want to help, they will regardless of diagnosis.


The only diagnosis that really helped my younger two was asd - that was what kickstarted the support that they needed.


Are there any other schools nearby with better reputations for SEN?


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I have to agree with donatella. It may be worth looking at a different school otherwise you may just find yourself fighting an endless battle with little resulting support. So frustrating i know !


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It is not the most useful diagnosis for anything other than the Meds tbh. You could always apply for dla for her - my nephew gets it. He also got help in school. But all this was based on his behaviours and needs NOT on his diagnosis. The diagnosis is just supporting evidence. If school didn't think she needed help before, having the diagnosis won't necessarily change that. It might help them to understand your daughter better and view her behaviours in a different way and this might enable them to identify more ways of helping her, but this isn't always the case.


Did the assessment rule out ASD?


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Thanks Flosskirk

Yes, they ruled out ASD, but we were asked a lot and there was a lot of observations going on. They certainly did consider it and attachment too.

Swimchic

x


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So in school she is where she should be accademically and not behind? And she does not need extra attenttion? She's managing well in breaks and is accepted by all children? Why are school moaning I wonder? Wink

If the answer is no than you might be better off to get her independently tested and see where she really is in school levels speaking, including her intellect, logic thinking etc. Those results can be very different from what the school tells you.


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How do I go about that Pluto?

School said to us before the summer break that she wasn't doing 1-1 anymore as she had done everything that they had planned and therefor she would be going into small groups.

BUT in the referral to the paediatrician, they said that she was really behind..

How much are we looking at getting an independent view?


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You would really be looking to get an educational psychologist involved. This is relatively easy to organise - just google for people in your area. But check out a couple - you want someone who understands attachment/trauma and who is going to write a report, not just give you the results of the various tests they do.


This assessment will show up things like dyslexia and dyscalculia, also base IQ levels and the adhd and what to do about it in school. This is where you are now tying together the adhd diagnosis and what she needs in school - at the moment all you have is a stand alone adhd diagnosis and it is not education-oriented.


It would be good if school would involve their own ed psych but that's kind of unlikely tbh (they decide who gets seen and they don't get much in the way of ed psych hours from the LA). You could always ask them if they would spend the PPP on her being seen by an ed psych, but they may say no. So then you need to do it yourself.


An OT assessment would be really useful too. My daughter had this - it was more useful to us than the ed psych report in terms of getting her help. Here is where it gets a bit complicated as the OT may suggest that sensory problems are to blame for her issues, and not ADHD - there is such a huge cross over. The report again needs to be educationally oriented - not just a stand alone OT report.


And the final one which would be great would be a speech and language assessment. This was the most useful assessment of them all for us. We had no idea our daughter had any problems in this area but she had plenty. Part of her problems were that she wan't properly understanding things and she was going off on her own tangent - she would never show that she didn't understand so she kept getting things wrong. It also explained her lack of social success with the other students. It was a real eye opener. You can get a private report done but you can ask school for her to be seen by the school SALT - it is often easier to get this than the ed psych as SALT is NHS and they have more funding than the educational services. But it will be a fraction of a private assessment - still it's worth looking into.


What you then do is go to the LA with your evidence and use it to get an EHC Plan, if that's what the evidence shows. The LA will then probably fight you and it's your evidence versus theirs. But your evidence will be so good.


Unfortunately, schools often just ignore private reports - they don't really know what to do with them to be fair. They can only offer the help they can offer and often that just isn't what you need.


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Flosskirk has explained it better than I could as I do not live in the uk. I want to add that if you get the right reports your daughter might qualify for special education. And it is good for yourself to know so you can have realistic expectations for the future and you'll be stronger as you can say things about your daughter as facts. 'Oh she's really good in logic thinking' the teacher says', You can ask her to explain and than refer back to the report. They can no longer tell you how things are and that she does not need help. Pressume goals are set? Why are they not achieved? etc. Or better why is she still behind? Is she catching up? Generally delays only get larger if they get on for a long time.

I remember unless a child is three years behind the'll keep up appearances as if nothing is wrong, I might be wrong but it was a huge delay. While in fact 6 months delay needs already intervention.


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Hi,

If you're question "How much are we looking at getting an independent view?" means how much is it likely to cost (sorry if I've misunderstood but this is how I read it) then you are looking a several hundreds of pounds, potentially.


We went to a private Educational Psychologist for my AD about six years ago and it cost £500, ballpark (London area). Having said that we had the primary school organise an Educational Psychologist for AS (different school from AD) and it cost nothing (but we did need to wait several months (4?) from the initial parent discussion with the Ed Psych to her observations and then being talked through the results (Summer holidays got in the way). AS's school are really attuned to adoption and the individual needs of individual children, which really does help enormously.


When it comes to Speech and Language, you should be able to find somewhere in the LA that will offer this for free - at least that is what I found. We were referred by AS's nursery when he was about 3 and it did help. We also got Speech and Language Therapy from the school when AS went there. As others have said this is really helpful, probably more helpful than any other in our experience, and gives the school something really concrete that they can work with.


But, as with so many things, I think that getting any of this help via school will depend on how attuned the school are to these services, how they spend their PPP and whether they can "see" that you child is struggling either emotionally or educationally. If you say that they are not particularly supportive then this may well be a challenge too far for them initially.


As others have suggested it might take a bit of "fight" on your part for the school to support you in this; so much depends on how much the school "get it". If you can afford to go private in order to make your case then I would advocate doing so. However, if that might be a struggle then I do think that you should be able to get much of what you need without your having to pay, if you look in the right place.


Sorry, that was a bit vague and waffly but hopefully helpful. I hope that you can find the services that you need in order to support your AD. Feel free to PM me if it will help.


Peahen.


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Sorry, I should also have mentioned that Speech and Language Therapy does not (as the name implies) just help children to talk or listen more clearly, it offers so much more. The basis is that our interaction with others is all to do with the way that we "communicate" which can include what we hear and see, how we interpret, how we respond and what we say to others. So there is a big focus as part of this on social skills and interactions.


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Could you get any of this on ASF? Although that does introduce more delay with SW assessment of needs and funding application.


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We won't get anything on the ASF as its all spent on life story work.

Thanks for explaining things..Lots to think about.

Swimchic


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Forgive me if you've covered this elsewhere. Virtual School? Do they have a learning mentor for adopted children who can help? Ours is amazing - talks school language and talks adoption. Advisory teaching service on SEMH? Again, very useful here. Does observations, recommendations and then comes back to check. Also, is your paed/camhs link writing to your Senco? If not, ask them to. Assume no professional will talk to another automatically - become the coordinator of your daughter's team and help them talk to and learn from each other.

You have done so well in the last week - chin up. You are an ace parent!


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You could contact what used to be called parent partnership - now called Sendiass I think in your local SEN department - they have someone who is there to provide independent advise for parents. I found them very good. Also try IPSEA who are a national organisation providing advice to parents on what should be provided and how best to approach your local department - you can book a conference call but you have to email them first I think then keep their website open as the slots get booked very quickly. You could also try one of the organisations supporting parents of kids with ADHD such as ADDISS - you may well find they have a local branch which would be particularly useful as they will have local knowledge


As others have said the support the school provides will be based on your daughters actual needs rather than a diagnosis - though she should go on the SEN register anyway as a result of her diagnosis I would have thought - so when discussing things with school concentrate on her actual needs in terms of learning in school (including social and motional needs) however caused


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Thanks Safia..

So far I have contacted Virtual schools, Sendiass and plan to speak to IPSEA.

Next stop call a meeting with school when we have received the report.


Swimchic


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My sendiass team basically just tries to fob parents off and get them to accept what school / the LA want ( I should know, I used to work there!). They won't help a parent who is fighting for more support.


I would recommend SOS!SEN


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What's SOS!SEN ? Flosskirk???


Also, another question... Is adhd classed as a disability or sen??


Thanks again


Swimchic


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It's an educational charity. It can offer more help than some. I used them after trying ipsea and sendiass. They have a website site. They are much more parent led.


There is not really a list of disabilities as such. All depends on how you are affected and what you can / can't do. A diagnosis is only really supporting evidence. There is no such thing as ' registered disabled' for example. But you could try applying for DLA and if you got mid rate care she would get access to services - you could get carers allowance for her for example ( but you can only earn £110 per week max to get it) and she could get discounts to cinema, theme parks etc. She could get access pass at theme park if she can't queue. my nephew gets all of this just with adhd but it's not because he has adhd - it's due to his behaviour which in turn is explained by the adHD.


Adhd is not a sen. You can have it and not have sen. But you might have sen. The adhd diagnosis would help concentrate minds and help prove the need but it's not sen in its own right.


Hope that makes sense x


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It does,

Thank- you Flosskirk, I really appreciate your advice and time.

Swimchic

xx


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