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.

Embrace. DS1 is frequently anxious and distressed. If he's having a meltdown, yes it's bloody awful for us, but it's worse for him. He ends up exhausted by it. Everything that is done for him is done with his long term mental health and self esteem in mind. The benefits to us really are secondary.

And by long term, I am thinking way beyond school. He will still have ASD and ADHD when he is an adult and he will have to find his niche in the world, then. School is a decade and a half of a potential century of life.

In our case diagnosis has brought statement, special needs health care, place at special school. Two years ago I was doubtful my son had ASD. A year later there was absolutely no doubt about it. Still took another year after that for all the assessments to take place. I sat with a group of parents last week for a presentation about my son's new school. Most of them were foundation age, my son is two years' older and I was envious that they were starting their kids education with full support in place. It's true that problems will highlight once in school. What is also true is the distress the child goes through in this situation and the hell you go through as a family. No harm in letting professionals start the process early on.

There is far more to life than school. Being constantly late, disorganised and impulsive due to ADHD gets in the way of someone being themselves, it doesn't define them, and the world (e.g. employers) is never ever just going to tolerate that thanks to some noble broadminded attitude towards difference.

Embrace, it was medication which gave my DS enough concentration to learn to read. He was 8 yrs and 3m when ee started nedication and a non reader. Within three months of starting medication he could read.

But do go on judging me (and others) for "kidding ourselves" that we use medication to make our children"eeasier to parent".

In fact if you had ANY knowledge about this subject yoywwould know that is not the case. Still you are no different to all the other ignorant folk we come across on an all too frequent basis.

OP, do they know what is causing her seizures if it is not epilepsy?

No, she has been having them for just under 4 years and just go round in circles. She's doesn't have developmental delay so she doesn't fit the mould for epilepsy though they haven't ruled it out entirely.

Jakebullet I'm not trying to insult anyone here, but give over a different, less common viewpoint, that some people may take something from - those who think I am talking shite are free to ignore and carry on as they are!. My question to you personally would be why did your son 'have' to read at 8 years 3 months? It's really only the school system that convince us there is a problem if our child isn't reading by a certain age - once out of the system children are free to learn at their own pace and research has shown that if that is 3 or 13 it really doesn't matter. The single most important thing is that they aren't pushed before they are ready.

As for your accusation that I have no knowledge, as it happens, I do think I have a lot of knowledge on this subject because, 1) I have one child with a diagnosis, and one child who could most certainly get one 2) I am a psychologist 3) I have written a book and academic articles about ADHD 4) I homeschool and know many many children on a personal level with diagnoses/symptoms within the homeschool community who have gone through similar experiences to my son.

To the poster who said each child is an individual, I couldn't agree more. Which is why I believe school is the worst place for children as a teacher simply isn't equipped to meet the needs of 30 'individuals'.

ouryve and ageofextremes Despite what the fear-mongers will tell you, I don't think it is a good idea to be parenting a future adult, you should parent the child you have right here right now in front of you. Whose to say your child will even have these issues then and whose to say what type of profession they will go into and what will be expected of him. In some professions impulsivity, for ex, would be highly valued. I know many an academic in my circles who are hugely disorganised but are highly renowned in their chosen fields. You just don't know and training a young child for something they may or may not do in later life just seems so unnecessary and potentially harmful.

Flojo - it's massively frustrating and worrying to have a child with an issue that isn't being diagnosed...My DS was 'being assessed' for various developmental difficulties from the age of 2, he didn't get a diagnosis of anything until he was 13 even though every professional he saw agreed that there was 'something' going on.

Now that's nowhere near as stressful as seizures with an unknown cause, but I do know what it feels like to be constantly going round in circles while they check new theories of what they think it might be and try different assessments and different specialists.

During that time he was assessed for ADHD even though it seemed patently obvious to me and his school that that wasn't the issue - I filled in a questionnaire, the school filled in a questionnaire, he had a wee chat to a doctor and that was it, because he doesn't have ADHD. It might seem like a bit of a waste of time, but, it either rules it out and they can concentrate on something else or it opens up another avenue that might actually lead to something useful.

Being assessed though doesn't lead to a diagnosis if the child doesn't have something.

FLO- my child has a diagnosis of epilepsy- she has no developmental delays either, but she has recurring seizures. That was my understanding of epilepsy- recurring seizures, caused by many different factors and can cause many different problems, developmental delay just being one of them. I would be more worried about getting to the bottom of what is causing her seizures and deal with that first, TBH. It may cause difficulties for her at school if she is prone to seizures. Is she on anti seizure medication at all?

Why did my son have to read at 8 years and 3 months? Perhaps because he was crying every time he was asked to practice phonic sounds...out of sheer frustration and poor self esteem. How nice for YOU that you can home school, that option is not open to all of us, especially not as a single parent with bills to pay.

The medication makes no difference to my son in ease of parenting. I still have to parent him and he needs strong boundaries and lots of reassurance and love. Medication did not change my son's personality and nor did I expect or want it to. So to suggest that I or any other parent choose medication in order to make our children "easier" is frankly insulting....and that IS what came across from your post.

Yes in an ideal world I would ditch the medication and home school but we don't live in a pretty and ideal world.

Oh and to stand ANY hope in life I have always found that being able to read and write is a pretty useful skill to have! My son is a white boy in the education system, you don't have to search very far to find the research and concerns regarding that cohort of boys. My son NEEDS to read and the medication helped him to do this.

I DO hear what you are saying but for most of us the opportunity to home school and wait for our children to be ready to read just isn't there (I don't know that my son would EVER have "been ready"). I am stuck with the system we have. I am NOT "kidding myself", I KNOW the realities for my son which mean he will struggle far less in the future if he can read and write.

It's not about parenting a future adult it's about just being aware of what will be ahead of them, and that saying "oh no need for diagnosis because look childhood is going to be fine because we're HEing" might be a bit shortsighted.

You don't actually have to do anything in particular with a diagnosis, you can simply treat it as a bit of useful information. Everyone's an individual and no two people's ADHD will be exactly the same, so it doesn't force any one response. It does though just confirm that something is a recognised problem that needs some extra help and work by adults around a child rather than them just writing the child off as naughty.

Most of us would love (or have loved) a 1:1 education that was perfectly tailored to us and let us develop at our own pace, but it's not available to most people.

I find it really odd that someone who is a psychologist and has written a book about ADHD would make such sweeping and simplistic statements as you have, about the motivation of parents and teachers and how diagnosis is only useful in order to make children easier to deal with by parents and teachers. It sounds more like part of an (HEing-inspired) anti-schools rant than a considered intellectual criticism of the value of diagnosis.

If the alternative to diagnosis really was, for most people, a chance for an education individually tailored to them that says everything is fine and "normal for them", then it would be much easier to say oh yes sod the diagnosis (at least for a while). But it's not. Actually the alternative to diagnosis for most people is having their behaviour simply labelled naughty or lazy or aggressive or weird - even by themselves.

One of the things diagnosis gives an person is insight into their nonneurotypicality and that can be enormously useful and can stop a lot misery and self-criticism after yet another failure, or struggle to do something that other people somehow find easy. It doesn't make the non-NT person any less valuable as a human being. If you say oh we don't need that because childhood is fine, just bear in mind the future effects on the adult that child will become, too.

Also bear in mind that there may be people out there who agree with you in many ways about schools and their limitations but would value a diagnosis even for an HEd child, or for themselves as an adult many years free of the constraints of school. Diagnoses of ADHD or ASD or whatever are not something only forced on the world by an education system and that otherwise we just wouldn't need.

"I know many an academic in my circles who are hugely disorganised but are highly renowned in their chosen fields."

I would read that as they have managed to become highly renowned despite being hugely disorganised (and often they are well supported by secretaries and assistants once they get to a certain level in their careers, which helps).

But it's not much good if your huge disorganisation stops you graduating with the initial BA or BSc or whatever you need as the first step in your academic career, is it?

How many potential "absent-minded professors" that could have got further have been stopped at the hurdle of A levels or BAs because despite having no problem understanding the concepts they just can't manage their time or organise their workload well enough to get through all the work in time?

About the only profession DS1's impu;sivity is likely to be valued in would land him in prison, Embrace.

I have known enough absent minded professors in my day and ime the one characteristic they do not have is problems in concentrating. You simply couldn't produce the research needed to become a professor if you were easily distracted or had difficulty focusing. Nor can you become a professor if you are unable to put your intense passion for your chosen area of research aside whenever needed to focus just as closely on questions of teaching or pastoral care.

What comes across as absent-minded-professor-ness in academics ime is not concentration difficulties but a certain tendency to undervalue some aspects of life (a tidy office/keeping track of your business diary/neatness in dress) because they are prioritising other aspects (research, teaching).

Some older academics ime milk the image because it confers a certain cache- but as academia becomes more and more business driven this will no doubt shortly be a thing of the past.

I agree, except that I think someone's ability to concentrate on something in which they're intensely interested, like a pet research area, probably doesn't by itself exclude the possibility of ADHD (any more than being able to concentrate on a video game excludes that possibility in a child).

Other than that I'd agree that all the other obligations related to being a professor - teaching, pastoral care, less exciting first degrees and postgraduate work with less choice and interest that have to be completed first - make it unlikely that someone with concentration issues bad enough to get any kind of diagnosis would get there without help and treatment first.

Those people that are there and have that particular image may as you say just have different priorities, or personality quirks rather than diagnosable issues.

DD isn't medicated, her seizures last less than a minute and touch wood she's always come out of them naturally.

Flo, my DD is the same with her seizures. But as she is at school now we have given her anti seizure medication to try and keep her safe whilst there. There are so many different issues with children having seizures at school- having one on the play equipment, having one in the toilet cubicle , at swimming, in full public view during something like assembly- it felt wrong to not give her the medication as there would always be a chance she would have a seizure at school. You may want to get her seizures investigated so that she is on some sort of treatment by the time she starts school. I wish you luck, I understand the hideous feeling of seeing your child have a fit.

She has had ECG and EEGs and blood tests but all were inconclusive. I was told epilepsy in a young child would def have developmental delay.

ourvre "About the only profession DS1's impu;sivity is likely to be valued in would land him in prison, Embrace." What a lovely way to view your child.

Bored with this topic now.

Bored with people judging.

Bored with so called "experts" giving pretentious views from their ivory tower.

Bored with hearing that medication is an easy option.

Interesting that you honed in on the short and frivolous comment but have nothing to say about the lengthy replies to your previous post embrace.

I am off this thread

I am a Mum
I support my child
I want him to achieve the best he can in life....amazingly that means he needs to read and write. Shocking I know.
I give my child medication on the advice of a paediatrician to help him reach his potential.
I do not give it yo make my life or the school's job "easier".

My child is a boy first and foremost. He is active and gregarious. He also happens to be autistic and to have ADHD. These do not define who he is bit simply add to the challenges he faces. Medication makes HIS life easier. ..not mine.

Out of here now

jakebullet

I don't think you are bored, I think you are offended, because it is damned hard being the parent of a child with a dx, and you feel I am having a go when you don't deserve it. I am sorry you feel that way, because it isn't what I feel at all. In reality I am having a go at educational and health professionals and the attitudes of wider society. Of course I believe that you are, and all the other parents out there in 'our boat' are trying to support their child and give them the best in life. I also don't think medication or treatment or special ed schooling is the easy option. Far from it. I think it is a gut-wrenching, drawn-out, soul-destroying process for the parents and the children involved. And it is almost always done by the parents with the best interests of their children at heart, thinking they are doing right by their kids. Because that is what everyone around them is telling them - the teachers, the paed's, the psychologists, the speech therapists. They are all around us telling us that if we don't do this and that, our child will end up behind, challenged, anti-social, in prison, a sociopath etc etc.

What I am asking people to consider is the possibility that perhaps the usual protocol for dealing with a kid that doesn't fit the mould, by 'professionals' and by wider society is actually seriously flawed. That perhaps, it is the way we view children and their behaviours that is the problem, not the behaviours themselves. And perhaps any child could gain a diagnosis of ADHD etc - it is really down to the perception of the adults in their lives, so one adult may see a high-energy, passionate, driven child, another may see a child with ADHD symptoms.

Many people feel that a dx is better than their child being labelled 'naughty', but it doesn't have to be either/or. Having the label of a disability is very hard to shake, and often a parent and certainly those around them, struggle to see past the label even if years afterwards the behaviours have ceased.

And to those who say their child is happier on medication/with a dx, if they are in school I don't doubt it. They often 'need' it to learn the way school expects children to learn. Children who are dx with ADHD and ASD often just learn in a different way but it is a way that isn't accommodated by school. I would rather remove them from the system, than drug/treat them to fit a flawed system. I am sorry you feel that is an anti-school rant, but that is just the way I see it. And I don't live in an ivory tower, in fact we have made dramatic financial changes to homeschool all four of our kids because it was so important to us as a family. I don't want to get too deeply into my personal situation, but we really do live on very little money, and although not a single parent financially I may as well be as my husband is disabled and cannot work. That said, we have never been happier.

Embrace, from what I have learnt on the SN boards, it isn't always just about parental expectations of sending their child to school/getting them to conform to certain expectations. Many children with ADHD are frustrated because their SN gets in the way of something they want to do, whether that is interacting with other children or mastering a skill they dream of. Sometimes there are siblings whose needs have to be considered too and who (particularly if they are much younger or have SN of their own) cannot always adjust their needs and expectations. It isn't just about what the parent thinks.

This chimes in with my own experiences of parenting a child with a totally different type of SN. As she grew I found that it wasn't actually so much about my expectations of her as of her own expectations of life.

People kept saying "oh, but if only society were more accommodating it wouldn't matter that she was in a wheelchair"- well, it mattered to dd because what she wanted to do more than anything else was to dance!

People would say "oh but you should home educate and all your problems with attendance would be solved"- totally ignoring the fact that dd did not want to be home educated and was very unhappy during the periods when that was the only solution. I could have HE'd quite happily if dd herself had not shown herself so obviously resentful.

Children are all different. What is the making of one may be a source of deep unhappiness to another.

Hello all,

We're just going to move this to Children's Health, at the request of the OP.

"Many children with ADHD are frustrated because their SN gets in the way of something they want to do, whether that is interacting with other children or mastering a skill they dream of."

Exactly.

Embrace, you seem to be defining ADHD as a problem so mild that it that goes away in a different environment and then saying look there's no such thing as ADHD because it goes away in a different environment. The thing is that by definition ADHD is actually what you have if your problems don't go away in different environments. You might make more progress in a different environment that compensates for them, but that's not the same thing as the problems not being there at all.

I do think the the best way to learn anything is, if you can, to 'ride the wave' of a strong interest to teach yourself - much better than the stop/start way of school. Unfortunately even at home there isn't always a wave like that available. Sometimes you also have to slog through duller and more difficult bits to get to the rewards even with something you're strongly interested in. That's why simply creating the circumstances where the wave of interest can be ridden (i.e. a home ed environment) isn't necessarily going to be enough to compensate for serious issues of concentration or focus.

Imagine a child who is home educated in a very autonomous way and doesn't have their interest caught by a particular topic until they're 8, but who then when they decide they want to learn is able to pay attention and concentrate well enough to make progress. That's great for them, they've learnt what they wanted to learn at the right time for them and the fact that they didn't want to learn it earlier is not a sign that they've got a problem.

But then imagine another child in the same circumstances who also decides they'd like to learn that thing at 8 but who then has huge difficulties concentrating on it and making progress, struggles, feels disheartened, stops and starts or gives up, because they've got an underlying issue. That child is not getting what they want, and it doesn't just mean it wasn't the right time for them to learn to read. They wouldn't necessarily be better off at school, but the point is that just being at home with the opportunity for lots of self-directed learning isn't a magic bullet that makes issues like that irrelevant. (I used to think it was, actually, but I don't any more.)

Being at home with the safety net of parents who will not totally leave you to sink or swim but who will guide and encourage you through the harder or duller bits is possibly best of all (so not totally autonomous, perhaps) for people with this type of issue, but even then the issues haven't just gone away, rather individually tailored help is being given to compensate for them.