Does he/doesn't he?

[WilfShelf]

...have SEN? I dunno. If some of your more experience SN parents wouldn't mind, I'd really appreciate you reading my thread here

I think we've decided now we will follow the school's suggestion of observation from the behavioural support people. But at the same time pursue other things (perhaps a private assessment? But how to find someone? Follow up the asthma assessment again...? Food allergies?)

I guess lots of parents who eventually find their kids do need extra help with SN start out where we are (defensive, disbelieving etc). So I could do with hearing some of your experiences. But I reserve the right to stay sceptical and carry on thinking they're barking up the wrong tree here

Anyhow, if you are willing to help, please read thread and advise what we should do next?

Hi wilf.

I can't really comment on the individual "symptoms" because my SEN experience is that it's so contextual; until you have seen what they are seeing in school it's impossible to tell if they are being reasonable.

What I will say is that last December, at the age of 43, I was belatedly diagnosed with ADHD. My mother is a teacher who had plenty of "hyperactive" kids in her classroom, but missed the symptoms all my life. A life that would have been happier, more successful and unarguably better with a childhood diagnosis and with those Evil Doctor Meds, which btw I am now on and the experience bears no resemblance to anything you have read in the media.

We get a lot of posts on this forum from people at various stages in the diagnosis process. It's not exactly a scientific sample but the % of people posting whose kids go on to get a false diagnosis does seem to be small. And few of those have nothing going on - the more common problem is diagnosing the wrong thing when symptoms are confusing. A lot of the "hidden" conditions have similar symptoms and if I was worrying about anything at this point I'd be more concerned that they were doing the right tests and the right questionnaires and properly considering the various differential diagnoses, than worrying whether my child was being "labelled" by label-happy doctors. What is very very clear once you are in the system is that the alleged labelling process is actually hideously expensive and the NHS simply can't afford to do it when it isn't needed. A lot of the media stories about "overdiagnosis" are actually rehashes of stories from the USA where the private health system means the economics of diagnosis are completely different. It's relatively rare here.

I would echo the excellent advice detailed here..many of the people here have been truly inspirational to me...fwiw I actually found the "is he ...isnt he..." part of the process the worst part...once we had a diagnosis/label, it not only explained why DS behaved as he did but also meant I expended all that energy I had spent agonising on WHAT DS was into actually supporting him...the relief was tremendous..but I do understand the pain of the process.

As Justa* said (and I'm quoting out of context so I know it sounds harsh, but it is important:

'you are doing this for HIS sake not yours'

You're a grown adult who can take care of herself? He is a vulnerable child who needs adults to look out for him.

I went to an local NAS meeting just after ds had got his dx of ASD and the person who let me in and listened to why I was there said 'It's not the worst thing you know'. I wanted to punch her in the face. It WAS the worst thing that had ever happened to me.

However now, although I have never said it myself I have often 'thought' when other people tell me of a new diagnosis 'oh poor you, but it's not the worst thing'. I don't of course.

I suppose what I mean is that with acceptance and determination you can get a life that is okay for your family, that works, that is happy and that has potential to be successful so don't be afraid, just grit your teeth and go along with it. Hopefully it is all just a misunderstanding anyway.

Oh, and what they don't tell you, is that you can get the dx/label removed if and when it is no longer any use.

Yes. I do see that bit, that he might need extra support, from us, from school... I genuinely don't feel that this is Bad with a capital B, in a sort of 'worse thing that could happen' way. It's a shock, but only because it requires a flipping over of my world-view: that what we thought of as one thing might well be something else. And because we don't yet have enough evidence about that, the sadness is more that I might have let him down already, might have caused some SN somehow, might have been too stupid or selfish or vain to notice.

And because it is all so indeterminate right now, I am confused and trying to hang on to too many world-views at once. On the one hand, this is an informed, thoughtful, helpful part of the MN community, and I really appreciate your thoughts and support at this difficult time.

But on the other hand, I'm also keeping a bit of cognitive distance from the idea of SN. I still don't KNOW this is what it is. And don't - please - take this the wrong way, but when you are part of community of shared experience, when you yourself have been through a diagnostic, treatment, support process, you are by default on the 'other side' of the divide. And perhaps are invested in being on that side of the boundary. You speak from your position, as parents of SN kids, people who have seen them benefit from treatment, support etc.

I have to still maintain my position on the fence, just for now, until I am shown by you, by other experts, that we ARE on the other side.

Am I making any sense? Burble burble burble. I did some crappy online ADHD quiz on myself today. I scored 86%: the likely threshold for ADHD was 70%. I am having a bit of 'ontological insecurity' meself here: I've just assumed what I am, and what DS2 is, is creative, and academic. Now I'm doubting that too. So it is mostly about HIM and what he needs, but also a bit about me. Even though I am clearly a high-functioning able person, it is making me question some fairly fundamental stuff about his and my identity...

Wilf, I've just briefly scanned these 2 threads and wanted to share some of my own experience with you.

DS2 has Asperger's traits but never merited a full diagnosis. He's one of twins and was so different from DS1 from infancy that I knew something was not quite right. I was both terrified to have a diagnosis and yet seeking some kind of explanation.

At 2.75 he was assessed as developmentally subnormal byt an academcially selecrive pre-prep school, whilst they loved his twin and offered him a place. Around age 5 to 6 he had speech therapy and the therapist told me that he clearly had special needs and would never get into any of the local fee-paying schools (which had been my hope for my twins).

I used to come away from appointmens in tears, as the label, 'Special Needs' was like a knife in the guts. In my family of origin, being anything other than at least super-normal wasn't acceptable so to feel I had a son who was sub-normal, atypical etc etc (and I use those terms deliberately here to indicate the emotional power they had on me), was a complete devastation to me.

The twins are now 9. DS2 is racing ahead academcially in the most academically selective school locally. My 'developmentally subnormal, special needs' child is thricing way ahead of his more neurotypical twin, who is actually now struggling and may show signs of attention issues, processing difficulties etc etc.

What's helped along the way is realisng that i actually know few is any other children who are problem/ issue free and who haven't got some kind of quirk or challenge. The school my twins attend is packed with really eccentric children who might be supergenius in one area but struggle in others - especially socially. DS2 fits in here v well so far, although i realise that he'll have more difficulties as he gets older/ reaches adolescence.

Along the way, many people got it wrong - but also got it right too, in so far as he clearly isn't an 'average' child and clearly has certain quirks.

But what's helped me most of all to diffuse the knife in the guts feeling has been retrospectively to consider myself and my own family of origin. I can see how all three of my sibs and I could have merited diffreent kind of diagnoses were we assessed today - Asperger's traits/ ADHD etc etc - AND our parents and their parents too. we're a really weird family - but then if I look around, I only know a handful of people who aren't really weird too, in some way.

So by realisng that perhaps I could be deemed to have x/y/z and yet here I am, still thriving in life, then DS2 (and DS1) have every chance of learning to live with their eccentricities and particular challenges and I'm a good example of someone who has survived and thrived, with all my eccentricities and idiosyncracies.

Somewhere down the line, when the dust has settled, I'm sure that things will be easier for you and you'll have found a way of accepting we are as we are and either you can stick a modern label on this (because sometimes this helps) or you can simply focus in on the collection of qualities that makes you and your DC who you are, without putting this in a 'box' or category.

I still don't really know if DS2 could be deemed to have SN (I personally hate that label) or just some quirks that make him uniquely who he is. There was one recent situation when it was very helpful for me to inform someone that DS2 had Asperger's traits but another and different situation where I was outraged that soemone declared to me, "Is it Asperger's?"... like, NO IT isn't Asperger's - HE is my son and in this context, there's nothing helpful about using that term!

Good luck

Wow at the last two posts.

Wilf I agree with justa. This place was invaluable to me during the is he/isn't he phase. It helped me explore issues that I couldn't on the main board and I was forgiven for making the most awful assumptions and mistakes about disability.

As it turns out 'he is', but also 'he isn't as much as he was' thanks to the fantastic advice I have had here about how to navigate the system, how to chase labels and services that are helpful and disgard those that are not and analyse the quality of things that are going to be beneficial or just too under-resourced for me to bother wasting a morning accessing it.

As a visual image, I see people's strengths and weaknesses on a linear graph that is spiky. Children who have difficulties are identified because some of their spikes go above or below 'normal' levels.

(as defined by people who have personality traits that mean they become pyschologists who then start up a society only allowing like-minded people in, and collectively the decide what 'normal' is, chosing themselves as the definitive - I digress)

Now these spikes can change over time. They can deviate further from the norm, or move towards it. Intervention targetted at these 'abornmal' spikes can help reduce their deviation OR rate of deviation. Clearly the earlier you start, the more time you have to alter their course, if you feel that would be beneficial to your child of course. With careful planning you can identify the 'spikes' and the rate of change. If there is none, you can change your strategy until you find something that works better.

I have no idea whether this is helpful to you or not, and I certainly don't write as well as justa but I hope it helps a bit.

Really helpful and very interesting posts here.

I think I will always be thinking "is he/isn't he", because DS (5) is changing so much, in terms of coping with school and improving speech. His dx certainly seems to be focusing the right kind of attention on him at the moment, and we all hope that the right help now will pay off as he gets older, and perhaps more obviously ASD.