Just to update.......

[Sean_and_Sue]

..................Finally got an appointment through for Ben to be assessed for ADHD! Its only taken 14 months, since I asked for help and I am still not convinced that they are looking for the right thing with him, but at least once they have seen him, he will be 'on the books' with the team most likely to help him, and that will hopefully cut down the wait for any other assessments he might need:)

We are still having problems with excessive physical responses for little or no reason, still dealing with inappropriate language and comments, still the mood swings and a few other problems - the only improvement has been in school, where he has managed to stay out of trouble - though I do know that there have been a couple of occasions where the only reason he hasn't been in the 'mire' is 'cos he hasn't been caught! Not entirely happy with his school achievements - they give 'predicted' attainment levels, and Ben's seem to be set awfully low - and he only said this morning that he finds most of his school work very easy - and he often comes home with tales that suggest he spends a lot of time messing about:(

Still - with this appointment at the end of this month, and a school review in March, hoping we are at last on the road to finding the best way to support him and see his behaviour (and his own happiness - he is 'down' a lot of the time:( ) improve:)

Love Suexx

[marioner]

So glad you have got his appointment, hopefully you may get some answers now and then some help. xx

[Diane]

Thats good news Sue. Lets hope that Ben is now on the right road to a proper assessment and that the necessary steps can be taken to help him fulfil his potential.

Diane x

[JaneSi]

That's good new - but 14 months is a long time to have to wait. We saw a consultant within 6 weeks! I do hope they can fin something to help you and your DS. Our DS says exactly the same thing about school and they are saying he is a straight A student, but not acheiving that level. We are at a loss to find something that will help.

[mainecoon lover]

How bad that you have had to wait 14 months :nonono: . I hope you get some answers and the right help you need.

[Sean_and_Sue]

Thanks Guys - feel like a weight has been lifted, now things look like they are moving!

That's good new - but 14 months is a long time to have to wait. We saw a consultant within 6 weeks! I do hope they can fin something to help you and your DS. Our DS says exactly the same thing about school and they are saying he is a straight A student, but not acheiving that level. We are at a loss to find something that will help.

I've had a ruck over the amount of time its taken, Jane - I was finally given the parents assessment form to fill out last Easter hols - I found out just before the 6 week summer break that the school had 'only just' returned their section of the paperwork, and it was all still sitting in the school nurses office, it hadn't been sent off:mad2: So no wonder the wait was so long - they originally told me 12 months, then they said 6....................but as I said, despite me chasing them up several times, its taken 14 months:(

The school say that they are 'pleased' with Ben's academic grades, that he is 'meeting targets', according to his last report:( Ben tested out at 'average or above' in terms of what his achievements should be, when he was about 8............his scores were so far below what his sister was 'predicted' at this stage, (and I expected a lower score - but not that low!), that I contacted the Mum of a school friend of his - her son has similar problems to Ben, not quite as bad behaviourally, but in terms of the dyslexic/dyspraxic traits - and her son's grades were a fair bit higher than Ben's -and then she told me that she had not long had a row with her son - because he told her he had been copying Ben's work:omg: So between that, and Ben's comments, I do think its an area of concern:( I wonder if the work is 'so easy' for him, that he just isn't trying - and maybe its a similar thing with your son? Its something I will raise at the assessment - if its appropriate - and at the school review, whether they think its a concern or not!

Love Suexx

[JaneSi]

Oh Sue - it's such a minefield. We were talking with a friend of ours and we were telling her of DS behaviour and she said it sounded very much like her son and that maybe we ought to see the GP. This is what we did and he just referred us. You seem to have had to go round the houses to get to the same point.

I agree that DS isn't trying anymore! But the school don't seem to help - there is a distinct lack of homework and in Yr9 we were told the homework would be quite a lot - but doesn't seem to have appeared! He will be in for a shock, when he has to start this GCSE course work.

[Sean_and_Sue]

Oh Sue - it's such a minefield. We were talking with a friend of ours and we were telling her of DS behaviour and she said it sounded very much like her son and that maybe we ought to see the GP. This is what we did and he just referred us. You seem to have had to go round the houses to get to the same point.

I wonder sometimes, if its just the area you live in - or at least, down to the support of your LEA:( I knew that Ben had 'problems' before he was 2 - I had a child psychologist visit just before he started nursery, just before he turned 3 - I was told he was just 'very stubborn' and I needed to work on putting myself back in charge:erm: He did so badly in school, in the early years, and for ages I kept getting told that he was just 'immature' - in the end, he came to the attention of the senco, and thanks to her, we were on the right track for discovering his dyslexia and dyspraxia - though the LEA refused to test him, and we ended up paying for a private assessment before we got any help. In a way, its because he had these earlier 'diagnosis' that its taken so long to get this assessment - because he already receives support in school, it was down to the LEA /school (or rather the school nurses) to make the referral this time - if we could have gone through the GP, maybe it would have been a lot quicker:(

I agree that DS isn't trying anymore! But the school don't seem to help - there is a distinct lack of homework and in Yr9 we were told the homework would be quite a lot - but doesn't seem to have appeared! He will be in for a shock, when he has to start this GCSE course work.

Ben's year 8 - and I agree about the homework - he seems to get very little - and what he does get is 'easy' enough for him to complete most of it, in the bus on his way home from school. And a hell of a lot of it seems to involve him copy or printing stuff off the net - the hardest work he has is to occasionally translate it into Welsh! I worry too about how he will cope with GCSE coursework - I have a fear that he won't sit as many, or do as well as he is capable of, simply because the 'targets' for him are set so low:(

Love Suexx

[sharooki]

Hi
I think It's disgusting that we have to fight so hard just to make sure our kids get the education and help they need. I have 2 boys who are Autistic and the eldest also has ADHD and Tourettes. I hope that you get the help you need for your son.
xx

[Jan]

Good luck, Sue.

[BarryandCaron]

Good Luck Sue.

DS2 was in the 'system' from an early age because of his medical problems but when his Consultant prescribed him Ritalin to help his behaviour it took over a year to see a psychologist about him. It was only through our GP who paid for private consultations for DS2 that we saw anyone when we needed to.

Caron

[hayleyandhilda]

i hope that this will provide the answers that you need or if not that it leads you on a more positive path - good luck with the appointment

[TinkTatoo]

Good luck Sue as I know how long you've waited for this appointment. Go in armed to the teeth with details all the other behaviors (sp) that just don't fit the ADHD profile and don't let the b*****d's grind you down ;) They might be keen to stick one label on him rather than spend time and resources on assessing and then dealing with the whole picture.

Let us know how you get on

[loadsapixiedust]

Best of luck with the assessment, it's shocking how much time is lost waiting for these things to happen. Lets hope that some positive moves will come from it.

[Sean_and_Sue]

Thanx all - Jakki, I've gone back and listed stuff that he used to do, that I was told was down to 'dyspraxia' as well as listed the bigger concerns we have now - and I will also say right from the off that this assessment was the one the school nurse insisted on and that I have requested a more 'general' investigation. I have read up quite a bit, and some of the stuff he has done/is still doing/has begun to do could fit with ADHD - but an equal list just doesn't fit:( I'm no expert, by any means - but I'll do everything I can to make sure that he isn't just 'hung with a label' that suits them - whatever it is, I just want to be certain that the help they offer is the help he needs!

Love Suexx

[TinkTatoo]

....but I'll do everything I can to make sure that he isn't just 'hung with a label' that suits them - whatever it is, I just want to be certain that the help they offer is the help he needs!....

Exactly Sue - they are more than capable of doing what suits them best rather than what Ben really needs.

Good Luck :pd:

[mazz]

good luck with this i hope it goes smoothly and quickly now after such a wait, can i add that parent partnership should be helping you if they are not doing so already :)

[Saratoska]

what a time to have had to wait Sue, shocking, hope thats you now going to get the help Ben needs. why oh why is everything a fight :cry:

[Jedi_Angie]

Best of luck for the assessment - I'll be thinking about you and your family. :)

[Sean_and_Sue]

Well - today is the day!

Sod's law that I am really rough with this cold/flu virus............and Sean had one of his clients rushed to hospital with that awful Nora/Noro virus on friday - and from the sound of it, Sean is coming down with it too, so I'll be taking Ben solo.

I am wondering if I will get a chance to speak to them, without Ben being present? Just I really am not comfortable about 'parading' some of my concerns in front of him - he is convinced that we are 'unfair' to pull him for some of the stuff he does, and I can see it badly upsetting him if I have to describe especially the major concerns in front of him:( I've told him that we are going because of the dyspraxia and dyslexia, and to check him out to see if he needs help in other areas, as lots of kids with those conditions often do - he absolutely will not accept that the stuff he does is OTT or out of order, and often behaves as though we have the problem in not seeing that his actions are 'deserved' or 'just a joke':( And he continues to deny doing things that we know, 100%, that he has done:( So its been really hard to be as 'up front' with him, as I would have liked to have been, because he gets really angry and upset if I suggest that there is a problem with some of his 'extreme' behaviours. I know I have to be honest with the folk assessing him - but its going to be hard if he is there throughout:(

Love Suexx

[TinkTatoo]

.....I am wondering if I will get a chance to speak to them, without Ben being present?........

Insist that you speak to them first while Ben waits outside (take a Nintendo DS or something to keep Ben amused while he waits) There is no way that you'll want Ben listening to what you have to say and I am sure they are used to Parents wanting to speak to them on their own.

Good luck withe the appointment and I hope you / Sean are not too rough with the colds / flu and other viruses that are going around

:pd:

[Sean_and_Sue]

Insist that you speak to them first while Ben waits outside (take a Nintendo DS or something to keep Ben amused while he waits) There is no way that you'll want Ben listening to what you have to say and I am sure they are used to Parents wanting to speak to them on their own.

Good luck withe the appointment and I hope you / Sean are not too rough with the colds / flu and other viruses that are going around

:pd:

Thanks for that - I just wasn't sure if they were likely to agree to it - at Ben's last school review, they insisted on him being there throughout - well, they did until it was clear that I wasn't happy with that, and they spared us a whole 20 mins at the end to cover some stuff we didn't want to say in front of him - but they were not happy about it:( I was dreading a similar situation. Some of the stuff on the 'check list' that they had us fill in last Easter has changed, and I need to let them know about it - but it covers areas that are a very 'touchy' subject with Ben, and I don't want him feeling uncomfortable:(

Love Suexx

[disney dave]

just to wish you best of luck sue, hope you get everything you need to help Ben, we are "old" fighters for our kids in school and know how tough it is for you. Good luck .


dave and lesley

[BarryandCaron]

Good Luck for today Sue. I can't see it being a problem talking to the professionals on your own about your concerns, just have a quiet word with them first telling them what you want to happen.

Hope you feel better soon as well.

Caron

[Disneybumble]

Best of luck Sue, I hope you get time on your own. Really thinking of you, XX

[Sean_and_Sue]

Thanks everyone - can't believe that I am so edgy about this! We have waited so long, I just want to make sure that I can get across every single thing that is necessary to get him the support he needs - to a certain extent, we have found various ways to 'cope' at home - but that isn't dealing with the cause, just managing the symptoms, so to speak!

Sean has managed to get home, but is pretty ill, so there is no way he can possibly attend this afternoon:( Mil has offered to come, but bless her, any of the kids could go mad with an axe, and no way would she be prepared to say anything bad about them - although she will agree with us - in private - that she is concerned, I know she will just put forward excuse after excuse if she was there, so its better if I go alone.:)

Love Suexx

[mazz]

as a veteran of many such assessments can i offer a small tip Sue

get out a pad and pen and write down all you wish to discuss with the specialist because i can guarantee there will be something you will forget

you have every right to discuss your concerns without your son being present and i would telephone in advance to make sure the clinic know that you will require some time with the consultant alone so they can provide a safe and secure waiting area for your son

there is a diagnostic tool developed by great ormond street called a 3GI (it's basically many visits with yourselves, the parents and some work done with a specialist mental health nurse alongside the child and inputting your answers and the data on a computer) if you feel comfortable ask about the tool and if they are using this to diagnose your child, it's normally used for ASD but they have used it before to rule out adhd when a child has more complex problems, the way i see it if the tool is available and your child doesn't quite fit the full criteria of adhd then they should be offering you the best to help you obtain a diagnosis for him

finally can i wish you good luck

marie

[Sean_and_Sue]

Thanks Marie - I have made a list of concerns/points that I want to raise, but I hadn't thought of phoning in advance - and nor have I heard of 3GI.

After 'talking' to parents on here, my concerns over just sending him for an ADHD assessment stem from the fact that although some of the stuff he does 'fits', there is a lot that doesn't - and concerns that I raised years ago, that I was told were associated with his dyspraxia, don't seem to fit in with what I've researched myself, and what I've heard from other parents. I know all kids are different, and there are 'degree's' of effect in most of the conditions that fall under this spectrum, but even so, this feels almost like they have 'decided' that he has this 'problem', and I worry that if they are wrong, he won't get the support he needs:( I have reached the stage where I will shout if I have too -would rather not - but as most parents of kids with this type of 'disorder' (whichever one, if any, it turns out to be:erm: )are aware, too often we are not given much choice:(

Thanks for that info - and thank you also to everyone else who has posted and pm'd me over the last 18 months or so, with information, advice, tips and good wishes - the support network on this site is absolutely amazing, and it would be impossible for me to express just how much you have all helped:)

Love Suexx

[grumpys wife]

Good luck for this afternoon Sue, I'll be thinking of you all :thumbs-up

[Sean_and_Sue]

Well - that was a LONG appointment - and you will be amazed to hear - I didn't shout - or feel the need to shout -even once!

They were fine about me having a 'chat' first - in fact that 'chat' last a good 45 minutes, while they went through quite a complex series of questions. So glad I had the notes, as it helped me keep track of all the issues I wanted to raise........most of them tied in with the questions they were asking, anyway!

When Ben came in, his behaviour - and his attitude to certain aspects of his behaviour - illustrated so many of the points I had raised! They had the info - from the school - about a couple of incidents there where Ben had really 'gone' for another pupil, and they asked Ben about it - he came back with the exact attitude I'd described - that he didn't have a problem, the other person had 'asked for it', and that he didn't see it as an excessive response. I warned them that he was currently in quite an 'obsessive' mood about football - oh, boy - did he bear that one out - every possible chance he got, the questions they asked were answered with a reference to footie and Liverpool! He talked about how bored he was at school, about the work being too easy, demonstrated on two occasions how he can totally 'zone out' on something said just moments before, and towards the end, he was getting increasingly flippant and outrageous in his attitude and what he was saying. He was openly taking the mick and being rude - but he evidently thought he was being 'funny'.

They told me - at the end - that they were quite sure that Ben did not display any 'traits' that indicated AS or any 'autistic type' disorder - however, he had displayed not only some traits of ADHD, but possibly of 'other conditions' that they felt warranted a more general and thorough assessment - and so thats where we go next! An 'observation' in school - that Ben won't know about at the time - and more visits for more 'tests and assessments' - I'm very pleased with that, because it seems to acknowledge that there is 'something' there and also because they don't appear to be ready just to hang the ADHD tag on him without exploring other avenues. They were also concerned that he is NOT getting the best education for his potential - they found him bright, and were extremely concerned that school are underestimating him - which is something I have also been worried about!

So - all in all - a much better experience than I expected, and best of all, I left feeling that they really were going to look for the best support and help for Ben. Having said that - I know I am at the start of this, and that it won't all be this smooth - but, its at least a positive start:)

Love Suexx

[TinkTatoo]

That's great news Sue and hopefully they can get to the bottom of it and give Ben the help he needs :thumb:

[kevbrydon]

Hi, Sue, just caught up on this thread:blush:.....I am so glad you persisted and are finally getting somewhere, although not fast enough for a concerned and well informed parent:).......sounds like you have a great chance to get Ben some much needed help and the CORRECT Help!!.........I know you are at most times, positive......and this will reflect in the willingness, of the experts to work with you and Ben.....so keep up the fantastic work......:wavey:

[disney dave]

hi sue, good news, hopefully now ben will get the help to move forward. good on you for pushing so hard
well done :thumbs-up

dave and lesley

[Disneybumble]

Sue that's great news that they are taking it all seriously. I hope you feel vindicated about your concearns. Onwards and upwards.

[Jedi_Angie]

Congrats on what sounds like a very helpful and productive meeting. Here's hoping your son gets the help he needs.