Hyperactivity label? [titled edited by MNHQ]

[Flojobunny]

Health visitor wants to refer DD (4 yo) for hyperactivity assessment. What is it with health care professionals trying to stick kids in to boxes.
Yes she's always on the go, yes she doesn't sleep but she's my DD and that is that. No good can come of being labelled surely.

I find it very worrying that a thread started about challenging the use of SEN labels for children is regarded as disbalist and is censored.

The issue of labelling and diagnosing various SEN is an ongoing debate within the professional bodies and academic literature of SEN, and is about challenging the 'within child' or 'medicalised model' of special needs. It's much debated and not controversial to have opposing views on this so I find the MNEt censorship of it concerning.

Obviously many parents on he seem to seize the idea of this debate as being about denying their children's SEN when it's really not, it's about just looking at it a different way.

Also there are many many parents just like the OP who do not want a diagnosis of an SEN for their child, they want their child's needs to be met when in school and want thier needs to be recognised but they resist the need to, in their view, summarise their child in one overarching label.

The OPs viewpoint should not be controversial it's a valid position many parents with SEN children hold.

There is also great concern in the medical, psychology and psychiatry fields about the over diagnosis of ADHD and the what is in some professionals views becoming a systematic medicating of a social issue, and the focus should be more flexible child friendly schooling rather than the medicating of children to fit the system.- this is one valid way of looking at many types of SEN.

I know some parents of children with ADHD will disagree vehemently with this view, whihc is fine, but I really don't think MNet should deny the debate that is genuinely going on in professional and academic circles. That's dangerous censorship.

But it's not an academic debate about differing models of disability, it's a public thread on a public board being commented on by a variety of people with a variety of knowledge and attitudes.

It's also not so much a debate about differing models of disability when the basic premise is that a disability is othering and to change that we should avoid being labelled as disabled instead of challenging idea that those with a disability are somehow other from everyone else.

Whether something gets censored or not depends on what's actually being said, ADHD is often misdiagnosed and children are put on medication for no real reason* is a very different statement to "There is also great concern in the medical, psychology and psychiatry fields about the over diagnosis of ADHD and the what is in some professionals views becoming a systematic medicating of a social issue, and the focus should be more flexible child friendly schooling rather than the medicating of children to fit the system" for example.

• I don't think anybody said that, but as an example.

"Obviously many parents on he seem to seize the idea of this debate as being about denying their children's SEN when it's really not, it's about just looking at it a different way."

If they seem to seize on that it's because that type of debate is often almost indistinguishable from doing exactly that, denying any SEN and blaming everything on laziness or naughtiness or bad parenting.

If the debate is actually about medication then that's where the debate should be, surely? Not "we'd better not try to describe this type of problem or give it a name because that might lead to medication and we don't agree with medication". Surely it's better to say "OK, this is the name we've arbitrarily chosen for this type of issue, now lets see if medication is really what we want to do"?

Change the condition in the OP to dyslexia...someone thinks my child has dyslexia, I don't think they do and I refused an assessment because I don't want them labelled as dyslexic.

You'd get the same number of helpful replies, you might even get a bit of a discussion about the value of dyslexia as a label when if a child is struggling to read they should be getting support even if they don't have dyslexia.

That's all fair enough - you wouldn't get people agreeing that being labelled as dyslexic and supported because of it is not a good thing so to avoid it you should think about homeschooling, because the discourse around dyslexia is completely different.

One reason for that is that (luckily for it) dyslexia does not stray into the territory of personal morality and 'goodness'.

You're not considered a better, more moral, person with a better character (reflecting good parenting) if you can learn to read. You are if you can sit still and not interrupt and get work done.

It's actually quite useful for society if we 'police' each other's behaviour with moral judgements about effort and so on - up to a point. That's hard on the people at the far far end of the curve who have real, neurological (or other persistent, pervasive) issues that make this sort of thing harder.

Those people fall foul of a world in which 'self-control' is never a medical issue, only a moral one, and anyone claiming it can be, say, a neurological issue is suspected of just looking for an excuse to carry on with bad behaviour (whether it's laziness, bad parenting or whatever).

(One exception, oddly, is if someone has had a past head injury - then funnily enough it is suddenly believable that a brain can have problems with impulsivity, focus, concentration, planning and so on that aren't just due to moral weakness or an unhelpful environment. You don't get many people arguing that those people are faking or being overmedicalised by lazy family members or a system with unrealistic expectations.)

That's not the only reason and I think there may be more controversy about dyslexia as well, but that's one reason why ADHD is fairly unique in some of the discourse around it.

I think AgeOfExtremes makes a useful point about labelling.

And it is particularly relevant when other children are involved because other children do, naturally, use moral judgments to police others and protect themselves.

If the child is to have any contact with other children, then a label can help the other children to put up with behaviour that they have been told would be totally unacceptable in themselves or their other friends.

If we are not allowed to use any SN labels, how do you expect other children to accept that they don't have to put up with James disrupting their play or getting aggressive but that it's different when Joe does it?

Ime children can be incredibly tolerant and helpful when it is explained to them exactly why Joe is different and needs different rules. But if everything is left in the dark they will just conclude that "I don't like Joe and the grown-ups are unfair to tell me off when I treat Joe the way he treats me" and then Joe will find himself without friends.

I know hundreds of children with dx who are unschooling and not one of them is medicated or having therapy. They are all happy thriving kids. That, I believe, is because they don't have the pressure of fitting in with school AND because they are parented to meet THEIR needs, rather than meet the expectations of society. For example, if a child doesn't mix well in large groups then the unschooling parent would not put them into large group situations - they would facilitate what the child was comfortable with such as one-on-one play. At homeschool social groups you will often see parents say, 'xx is feeling overwhelmed so we are going to leave now', or parents being right there with their children playing to help them navigate the different social situations they may be put into rather than leaving them to it and chatting on the sidelines. This just doesn't happen elsewhere, I have found. Children are commonly thrust into situations they don't have the tools to cope with 'for their own good'. When my own son was labelled with Separation Anxiety Disorder I was advised to use behaviour modification strategies designed to 'fix' the 'problem'. I didn't do any of that, I didn't force him to leave my side, I slept with him, I never left him with anyone else, and around the house I always told him what room I was going to. This was very much against professional advice but guess what - the behaviours gradually waned as he grew confidence. It was what he needed then and I was happy to give it to him.

My DS is a happy and thriving child, I believe that medication has played a part in that.

FWIW I rarely give it at weekends or in school holidays but simply let him "be". He is my only child and I can manage him with no problems. I DO give it if we are doing anything which requires his attention though. It is obvious when he has not had his medication on these occasions.

I DO understand what you are saying embrace, but life isn't luxurious enough to allow me (or thousands of others) to home school. Even if it was I suspect that DS would still require medication to help him progress - unless we had Dr Who as the entire curriculum which he loves!

I also have to think to the future, my DS needs to be able to function in society. In theory as he can now read and write, the curriculum is open to him even if he doesn't want to access it at the moment. That for me was an important goal, he still chooses NOT to read (unless it is a fact based book) but the important thing is that he can choose to read if he wants to.

It would be fabulous if we had an education system which met the needs of all our children but the fact is that we don't and I agree that in some cases medication is given to ensure the child fits into the system rather than the system adjusting to fit around the child.

I know unmedicated and medicated well supported children coping fantastically well, I know medicated children who like the results of medication even though the parents were reluctant to give it. I know children who would have coped if schools had done only exactly what they're supposed to and some who are getting support but it isn't enough.

There isn't a definitive solution that will work for everyone - home schooling may well work very well for some children, possibly for a lot of children, but some parents just aren't in a position to be able to take that gamble.

My DS (8.11) has struggled for years socially and in general we have always noticed he's 'different'. I could cope, thought that if I ut the things in place he needed that would be enough.

I was wrong and now we have been to referred to Camhs, he needs the support in place to help him cope. I'm actually hoping for a DX now.

"I know hundreds of children with dx who are unschooling and not one of them is medicated or having therapy."

Then it doesn't look to me as though the diagnosis has really hurt them. It doesn't seem to have forced them into taking medication, forced them to go to school, or stopped their parents trying other approaches.

However when they're past the stage of being parented full-time, if they want (or feel they need) to try something else too, a past diagnosis will make that a lot easier, at least in the case of something like ADHD.

It also gives someone insight into the general way their own mind works relative to the average person they'll meet out and about, and that can be so useful (it can be incredibly liberating, in fact, for people who get this insight only as adults).

To me there's not really any such thing as a 100% 'normal' person, and a diagnosis is just today's label for a set of behaviours or ways of thinking or functioning that happen to be extreme outliers relative to the norm and that may come from a whole variety of causes including just different neurology. Maybe the labels will be different in 5 or 10 or 20 or 100 years time. I'm not sure that really matters.

The point is that any difficulties that result from being an outlier in a world of more average people aren't going to magically change or go away if you refuse to do any describing or naming. Amongst other things describing and naming lets people with the same issues share information and insights.

Maybe I see diagnosis as less awful because I don't see it as being very rigid and prescriptive and forcing only one approach, but basically just as something that gives useful information and a way through to certain kinds of help, and a route away from misplaced moral judgements being given instead of help.

the focus should be more flexible child friendly schooling rather than the medicating of children to fit the system.

ADHD is not something that only exists in schools. My child with ASD and ADHD has those disorders at home, too. He also has those disorders when we go shopping (we have to go when it's quiet and woe betide us if something doesn't quite go to plan), go to visit family (2 nights maximum), walk around the village (unlike his peers, I can't let him out of my sight)....

Embrace, what would your recommendations be for a parent like the one on the recent SN thread who is thinking of ringing SS because she cannot cope with her ds at home, not getting nearly enough sleep without medication, and never able to relax and with meltdowns, and destructiveness very much a feature of their life at home?

Is it not perhaps the case that because your ds became relaxed and happy in a home setting you think that will happen to everybody's dc? But what about when it doesn't? When the child is still unhappy and destructive? And when siblings and others around the child are not getting their needs met because of e.g. constantly disturbed nights?

I don't think this can possibly happen in Embrace's little bubble, cory.

We're not enjoying the summer holidays at all. DH left late for work, this morning, because DS1 lost his rag with DS2 and then lost if even further because DS2 had the nerve to cry - he slammed a door in my face and threw a brush at me. Wanting a boy to not kick his brother or attack his parents is hardly wanting them to conform unnecessarily to unreasonable and artificial demands of society, is it now? (And, funnily enough, being off school hasn't cured DS2 of his SN, either.)

ouryve not allowing a child to hit their brother or parents, or anyone for that matter, is not an arbitrary demand of society. It matters. If my DS had had that much rage towards me and/or a sibling I would have known I had missed something. Something upset your son for him to react like that, and you missed the signs because it wouldn't have come out of nowhere. i am not having a go, because I have to be hyper-vigilante too with my boy, and I don't always 'read' him correctly.

Oh, and I do NOT live in bubble, and as I have said several times, I don't think homeschooling is completely the answer - mindful parenting is also equally important.

ouryve you sound like you have a little boy who is struggling and who needs you to help him navigate situations he finds tricky. Are you aware that you talk about him very negatively. I know that may be confronting and you will take offence, but if you really think about it it may help you. For example, rather than saying, 'he struggles with crowds so we take him to the shops when it is quiet to make it easier on him' you say ' we have to go when it's quiet and woe betide us if something doesn't quite go to plan.' All your comments are written about how his behaviour affects you, and as if he is doing it to be difficult. They are your words and reflect your feelings about your son, which of course he will pick up on. I think that maybe you should think about how you see your son, and whether that has anything to do with his behaviour.

'you will take offence'

Really? Who could possibly take offence at something so insulting?

embrace that was an extremely rude post to Ouryve.

I may add she has been extremely helpful to me on the SN boards as I've begun navigating the way through Camhs and the fact my DS has suspected ASD (AS). She has been nothing but positive and given me great advice about how to help my DS.

I find it interesting and sad that I am accused of being rude to a grown woman by highlighting the very rude way she is talking about her own child. Why is no-one jumping to the defence of the child? Because it is totally socially acceptable to verbally-bash kids. I was trying to be helpful but clearly all of you here are more adult-centred than child-centred and, quite frankly, you all disgust me because you won't open up your teeny tiny brains just a teeny tiny bit for the sake of your kids. Shame on all of you. I am out of here.

No-one is jumping to the defence of the child because he doesn't need defending.

Having negative emotions about the impact on your life that having a child with a disability creates is completely seperate from parenting them and how you feel about the child.

Expressing yourself about the negatives of parenting any child in an online adult forum is also seperate from actually parenting that child.

If you can't explore the negative impact anonymously in an adult only community - where on earth can you?

To suggest that accepting that there is a negative impact on your life when you have a child with a disability and telling adults that anonymously online might be picked up on by a child, who more than likely due to the nature of that disability can't even pick up on overt emotions never mind subtle ones, and may create the very behavioural problems that are creating that negative impact in the first place is just ridiculous and insulting.

For goodness sake, There was nothing rude about Embrace's post.
It was not rude in its wording or its intention.

If someone says something you don't like or you disagree with,..it doesn't mean they are being rude!

You don't think it's rude to suggest that a mother is causing behavioural problems in a child with two conditions that affect behaviour by viewing the conditions as having a negative impact on her?

I agree Embraces post was not rude at all.

Posts about her in her 'little bubble' are much ruder.

Some may find her opinions offensive but that's is really not the same thing. She has the right to express views which you may not agree with or like.

Ouryve expressed her difficulties with her son embrace suggested a different way of looking at this.

It's an odd state of affairs when the only sanctioned view of SEN children is that there is something wrong within the child and they need medication, and a differing framework of lets accept the child and look at the systems. Social, Eductaional , family, responses, demands etec etc and see if altering these makes life for the child and all better, is seen as offensive.

I don't see why that's offensive to parents of SEN children, its positive about accepting children rather than seeing the problem as being within them.

It doesn't have to be interpreted as a judgement of the parents as its really not. All parents have to deal with the child they have and the issues this throws up to varying degrees, those with SEN even more so, everyone recognises that.

Those on this thread that have chosen to use medication for thier children with ADHD seem to view this as a challenge to them and their decision and take great offense and don't want anyone to express these views as Embrace has done. Really, it's not a criticism of you, its not. Anyone who has experienced a child with ADHD can understand why some will use medication. If you're totally happy with that decision fine.

But there are other views on this, which you have to accept exist and are currently being debated in professional circles, and which you have eno right to shout down or censor as you feel it challenges your decision.

I disagree - suggesting practical things is different .

Of course parenting styles or different ways of doing things have different outcomes, with any child.

That's not the same as saying that a child may be displaying challenging behaviour because you're negative about chalkenging behaviour.