ADHD, anyone?

[ravensmitten]

I was put on all sorts since early childhood (was suicidal starting at 10, 11 or so), but ADHD/AuDHD was something for little boys, not anxious little girls who were scared of their own shadows. It never went further than a variety of antidepressants, which just made it worse. Mom tried to get me help, she was my champion through the years, but the people I was assigned to just kept botching it, diagnostically speaking. Over 13 therapists, shrinks, what have you... (Lots of turnover due to their starting their own practaces a few months in away from the dutch version of NHS care, almost on cue; not me quitting therapies until the last one in 2005.) None of them picked up on it. Now I'm finally being heard, just before my 45th birthday! Anyway.... I've tried an elimination diet for my rheumatism, so a lot of things have already been nixed, on top of diabetic restrictions... I don't think it's made a difference, but I can look into what it could do for ADHD, as the focus back then was on my joints, not my brain. Inconclusive or not, it's still worth checking out, I think. Especially since I'm a little worried nothing'll be tolerable with side effects. I know there's lots to try, but... I had a rough week on a smidge of medication, so... Yeah. Eek. So a diet for ADHD might be something to research, juuuust in case.

I'm sorry to hear of your difficulties, and not being heard so long. Thank you for your story, It's quite apt at the moment and something on my mind.

I've been umming and ahhinhg about having my daughter assessed, on one hand thinking I wouldn't want to put her through a lot of the prodding and poking I was put through, BUT on the other, I think I have to realise maybe things have changed, shes not me, and I'm not my parents (Not that I think I'd manage the whole thing any better than my parents did, after all they only did the best with the tools they had at the time.) I can put aside my own ego, feelings and experiences and personal reservations, in making that decision if it would be doing her a disservice by not having her assessed.

But maybe to manage it in a way that would be far more helpful to her than harmful, and not making it more difficult for her in future, or having to struggle to be heard for years because of my own personal hang ups.

I am not for one minute commenting on yours or anyone else's situation here, but thinking of it more I think I needed to hear your perspective.

Yes, def. without touching on the gender thing cause I don't want to generalise, while still recognising that as a big problem - if you didn't fit the stereotype that wouldn't be picked up on as such, and you'd be left to struggle despite all the underlying functions being the same while causing different manifestations and behaviours or them even being hidden, or masked by ways of outwardly coping while silently struggling.

Wrapping myself up in words here as its a difficult thing to speak about with any surety of anyone else's experiences.

My daughter has a few times had the school report of daydreaming (although that's very vague), and can be a bit chatty, and the last parents evening was a once she's on task she does really well but maybe it's a focus thing there if she doesn't want to do the task, and this rang home, we all have tasks we don't want to do but I find I have no problems focusing on the ones I really want to do, or the stuff I want to learn. she's certainly not "disruptive" or running about like a maniac like I was, but that doesn't mean that finding it hard to focus on some thing isn't there, for me that manifested in me climbing the walls. For her that might manifest differently.

There was this need for a nice ordered box to put us in and treat us blanketly, I don't actually know if blanketly is a word, but I'm going with it anyway. I think we are all a little more complex than this.

Long unfocused self indulgent ramble incoming...

Maybe things have changed now, as back then I *did* fit the stereotype so it was picked up on. I was labelled an "anarchist" at school for questioning authority at the age of 5. I think that tells me enough about the person who made that remark and the system they belonged to. Buut, looking inwards, maybe there is a bit of truth in that, of course the statement is extreme hyperbole, but sod your flipping system if a kid can't question it without it falling apart when you have no legitimate answer to those questions - and then you have no recourse but to ostracise them for being sceptical of the things they are told to accept. no, it was just shut up and do as we tell you while we treat you like another brick in the wall, don't dare to think yourself any different, not that I expected to be treated any differently or have any special treatment at all. We are all individuals, and I understand the resources thing, and I am also sceptical of utopias and idealism, yet the child processing factory created so many hostile situations that we get taught to ignore, put our heads down, get on with it and accept our lot, and not to stand up for things we believe that are right

I went on hunger strike once in an assembly, some bother happened at a local shop where a lot of us got food at lunchtime, which led to the process being cancelled and it was all school dinners or packed lunches from then on. I felt we were all being punished for the behaviour of a few, yet treated the same. I tried to unionise, got a good show of hands, until the headteacher said I'd be punished and everyone else who followed me in that would follow the in my punishment. It wasn't long before all of those hands went down when they learned the lesson that they couldn't have a principle without losing out on something themselves. I didn't eat a school dinner for 3 years.

God, I've even internalised that because I feel like a narcissistic entitled twerp here reading this back. Maybe I was a bit and I was just just difficult, annoying and disruptive and that was hard for anyone to manage in a setting that seemed to have a conflict of be yourself but prized uniformity.

I do realise that this might have been highly disruptive for other people in the class to get on and I cant imagine what its like being in charge of loads of kids, keeping them safe trying to get them all engaged enough to learn something, I'd like to think I could treat them individually and make the whole thing inclusive instead of that disrupting others, whereas other 'lessons' were taught. I did weigh up the idea of retraining to become a teacher at one point of my life and weave some stuff in there subverting the system, but I am so un-academic and it would probably be some form of retribution punishment that would put me in my place about how hard it must have been to deal with my behaviour when I was in class, and I probably wouldn't have wanted to manage that myself, so I'm a total hypocrite, and I'm biased.

Obviously this happens in more than one setting at school, and that's the thing, if it was just at school, then we could say that was the cause but for me it was outside of school too, so over the years I had to come to terms with being human with all my flaws and managing my own behaviours even if some environments encourage certain ones more than others.

lol can you tell?

 

[ravensmitten]

I was just thinking, this forum might have more than its fair share of neurospicyness (diagnosed or not), at least among the active long timers.
Think about it: Those are all people who went and wanted to learn absolutely EVERYTHING about their condition, experiment on themselves with non funded equipment, stubbornly followed their own path, often against medical advice, and rattle on and on about their new found obsession. (In a very good way, mind, often to help out those at the start of their journey, or help solve a complex diabetic puzzle an experienced diabetic comes up with.)

While this isn't behaviour exclusively reserved for the neurodivergent, it is strongly associated with it.

YES

 

[ravensmitten]

Oh the diet thing... see I completely forgot about that bit while rambling on.

I mean look into it if oyu like, as you say you have a pretty restrictive diet anyway. At the time the study I was part of was inconclusive but it was 40 years ago, and we know a LOT more now. And I don't know if I was part of a control group, or given a placebo, as some things, like food colourings, esscences, etc, were meant to be slipped into our food by our parents and our behaviours were observed over a period of months. The reporting was all through the lenses of peoples perceptions though I guess.

what was that quote...

“The trouble with market research is that people don't think what they feel, they don't say what they think and they don't do what they say.”​

― David Ogilvy

 

[Antje77]

Really - nothing to apologise for JoKalsbeek. It hurts all the time but it's so vital that we learn to talk about this stuff in safe spaces.

Oh, apologising and feeling guilty or a failure too often is just one of Jo's neurodivergent traits, as perfectly pinpointed by yourself here :

RSD (Rejection Sensitive Dysphoria) common in ADHD

Have you seen yourself hyperfocus on Saint Nicholas surprises for your loved ones? Do you really have any doubt there's something going on in there somewhere?

Apart from things like my hyperfocus/in depth study on Bob Dylan starting at 14 and lasting for at least 20 years, a bit less nowadays; my inability to function 'normally' on a day to day basis; needing to recover from social stuff, sometimes for days (which tends to include some strong RSD and feeling like a complete failure); chronic depression and anxiety; firm thoughts on clothes and how they should feel; strong feelings about the intricacies of language; a tendency to spend my life safely under my rock and avoid reading about the horrible stuff in the world; my sudden inability to make simple choices when 'my head is too full', and a friend who is adamant I'm too smart for my own good, no, I do not have any reason to suspect any neurospicyness!

 

[mouseee]

Oh @Antje77, I love this!
I am of the strong opinion that we neurospicies are actually in the majority it's just now we are all realising it!

 

[mouseee]

@ravensmitten I am a teacher of ....cough cough.... many many years and things have luckily changed in many settings. Speaking from experience, we are really aware of children who are neurodivergent. I'm not sure i had any children with SEN at all when I started nearly 30 years ago.
It'd definitely worth a word with the teacher to see how they can support her. You don't have to have a diagnosis for accommodations to be made. The girl that started my own research used to listen to wave noises on headphones when working and I know that I stopped badgering her to get on with her work and started asking her what she needed to help her focus.
I also had another boy the same year also probably ADHD who didn't finish a mother's day card of a teapot, in fact had hardly started, when I asked him why, he said, 'As soon as you mentioned teapots, that's all I could think about.' If that question isn't asked or the answer understood then it's what will be happening all the time and they will get in trouble!!

A diagnosis can be useful (with or without meds as appropriate) as they move on to secondary I find, as the teachers don't have the same knowledge of individuals.

 

[Antje77]

Seriously though... ND or not, you're an excellent human being, and a rather understanding one. You've been a big help behind the scenes since all this started, and well before it too, especially when my mom passed. Just had to say it, sorry.

Thank you!
It means quite a lot.

(Someone on the forum, I think it was @Paul_ , told me to accept compliments for what they are and not deflect them so I'm practising! )

 

[mouseee]

Thank you!
It means quite a lot.

(Someone on the forum, I think it was @Paul_ , told me to accept compliments for what they are and not deflect them so I'm practising! )

We could start a whole new thread on taking compliments when given.... lol

 

[ravensmitten]

@ravensmitten I am a teacher of ....cough cough.... many many years and things have luckily changed in many settings. Speaking from experience, we are really aware of children who are neurodivergent. I'm not sure i had any children with SEN at all when I started nearly 30 years ago.
It'd definitely worth a word with the teacher to see how they can support her. You don't have to have a diagnosis for accommodations to be made. The girl that started my own research used to listen to wave noises on headphones when working and I know that I stopped badgering her to get on with her work and started asking her what she needed to help her focus.
I also had another boy the same year also probably ADHD who didn't finish a mother's day card of a teapot, in fact had hardly started, when I asked him why, he said, 'As soon as you mentioned teapots, that's all I could think about.' If that question isn't asked or the answer understood then it's what will be happening all the time and they will get in trouble!!

A diagnosis can be useful (with or without meds as appropriate) as they move on to secondary I find, as the teachers don't have the same knowledge of individuals.

Thank you so much for this post, yes it was a long time ago for me so as I say I have biases and preconceptions that mightn't even be true these days.

The schools and teachers looking from the outside in do seem a lot more clued up now, back in the day would just be ghettoised into educationally subnormal (what a horrific term) and what was special schools, which seems well meaning but I think has its own problems of being an outsider and then trying to integrate into a "normal" world outside of that when you are on your own, but I'm guessing a lot of that has changed also.

Must be difficult, I wasn't disliked though as I tried to use my troublemaking for 'good', but I also marched to my own beat a bit, and had a lot of energy, so much it wasn't the right setting for me - sat down for almost 6 hours a day, being forced to do things I didn't want felt like some kind of prison for me at the time. In hindsight, I didn't really have the tools or when I asked I wasn't allowed to run 10 laps of the playground before doing lessons or everyone would naturally want to do it (probably not a bad idea, but I'm no expert and probably wouldn't work for some either.) but i did it anyway as I HAD to, which led to me getting into trouble.

I did speak to her teacher and mention I think it might be something that rings true, but then it might just be because she's my daughter and has picked up on stuff because of the way I'm parenting her, so am aware it might not even be that at all. He said that made sense for her to have that as he's seen the focus thing in action and maybe to speak with the GP for a referral, but would take it into consideration now it makes more sense rather than her being a bit "ditzy" (he didnt say that and I don't really like the term, but I reckon a lot of girls might suffer the same accusation.)

I of course have a very spicy brain and have been milling it about for far too long and procrastinating on it as its a pretty big thing.

Good call on before secondary as the classes are bigger and there's also a lot more self managing to do, thanks @mouseee :0)

 

[mouseee]

I have had several children who have had the exact instruction to go and run round the playground before we started a lesson and I didn't mind how many others joined them!
My current classroom is made up entirely of neurospicies for whom the mainstream classroom is just wrong. I love every minute...

 

[ravensmitten]

I took to running before school but wow, that would have been so much of a benefit not to have been chastised for trying to self manage.

Well I guess not just that because I guess I was being defiant, and we can't have that can we.

I mean it didn't rid me of all the other stuff, but it managed the hyperactivity bit so I could at least focus on the sitting down bit.

just one in an army of tools I had for a variety of "symptoms?"

And also not everyone is hyperactive with it I guess.

Funnily I'm not very hyperactive or impulsive at all now but I still have a lot of other throwbacks that why is this sock existing here? just here on it's own, the sock, the sock of the floor, what is existence, and what are the planets for? isn't that a funny old thing... right, the door... hang on a minute, the pans boiled dry.

As I say I think the world has moved on a bit since my own experiences, and it's why I probably already know what I should do re: daughter

 

[Antje77]

My best friend Inge works at a Dutch university as a student counsellor, and on top of her normal job she has been running a group of ADHD students for a couple of years, which has proven very useful to those students.
She has also been closely involved with @JoKalsbeek 's journey throughout the past year: I had a friend in need and another friend with the expertise, to combine them was the obvious thing to do.

I'm so very impressed by what everyone shared on this thread, and like I said to @Outlier , those experiences are very helpful in understanding how ADHD works, especially in adults and females.
So I told my friend because I thought this thread could be of help to her and her students as well, and you don't need to be a member to read the forum.

She also had a message to share for @JoKalsbeek and a more important one for @ravensmitten .
(Translation below the screenshot.)

Am I allowed to read all this as an outsider?

Yes, the forum is open for everyone.
You only need to sign up if you want to react (or if you want to get rid of those ridiculous advertisements).

Because A) Compliment José on her outstanding English.
B: Ravensmitten : yes, test your child, because
[screenshot in English]
This. And this is what José is finally experiencing herself.

I'm pretty sure José is ok with me sharing screenshots of our WhatsApp conversation, if this is what you meant. She's a fan of yours.

I've saved some tabs with all tips. What an amazing place that forum of yours is!


@JoKalsbeek , I guess this means we've come full circle. It started out with Inge sharing through me what 'her students' taught her, and now you and 'your gang' does the same thing the other way around.
Sometimes the world is a pretty ok place.

 

[mouseee]

The zebra analogy is perfect!

 

[ravensmitten]

Thank you @Antje77 for that reply, as I say I will do get her tested if not for her getting years down the line and having problems and no one recognising when she was a child as I'm sure that makes it far more difficult if you seek a diagnosis yourself later on. If that is something that she thinks will be helpful to her.

And for your friend to read that over, thank you. At risk of coming across rude and I appreciate the sentiment, my biased views differ on that.

I can't speak for my daughter, as she's her own person and wouldn't like to project my own feelings about the subject and attribute them to her or anyone else for that matter. The label didn't help me much in a few ways, and also because I am a 'strange' horse and I found it more beneficial to admit such a thing, whether, horse or zebra, I'm in a horses world, and the horses system is what we live by, with all the horses expectations, and all the horsey things, so for me it didn't really make a difference in a positive way, the story remained the same.

In fact when I did I realise and accept that, I found ALL horses were strange in various degrees rather than failed ones, we are all horses, flawed, imperfect and that's okay, sometimes it isn't. I could process that and find ways to be the best horse I could within my own abilities, and learn new skills to manage them. Find me a horse who hasn't got any foibles or feels like a failed horse now and again and I'll wear a zebra suit on the school run, I probably doesn't need saying and don't have to teach my granny to suck eggs in saying that some horses are affected by this far more seriously than others, but I'll include that for completism.

I found my own bunch of strange horses naturally, as my daughter has in her friend group, so that doesn't ring true at all for me and I'd be hesitant to teach this this myself personally, seems like othering a little, we are all the same but different. but maybe I'm off with my reading of that.

Saying this if someone is happy a zebra then so be it, who am I to say what makes someone happy in themselves.

 

[Antje77]

And for your friend to read that over, thank you. At risk of coming across rude and I appreciate the sentiment, my biased views differ on that.

Definitely not rude!
You sound like you're still that person with strong beliefs you were when trying to organise that strike in school! (Which echoed some of my own experiences with organising protests in my otherwise very nice school.)
There are many, many ways to skin a chicken, and there's no one way fits all.

Most of all, you come across as understanding, and appreciating the way things work for other people, even if it's not for you!

My friend's point of view stems from her experience with young adults who have worked their way through an academic education in a system that's not particularly friendly to the neurodivergent, especially not for those who were diagnosed late, and from being a mum to a 9 year old having a very hard time not being a run-of-the-mill horse.

 

[MrsA2]

All great supportive stuff

I don't have knowledge or experience of t2 and ADHD drugs but I do have a relative with autism, and yes he is very sensitive to any and all drugs, just like he's very sensitive to most other physical things such as sound and taste and texture.
It's just the way he is, he doesn't create it or imagine it. No blame attached.
I love the zebra analogy above as I was going to encourage @JoKalsbeek to embrace herself , not to look to fix herself - there's nothing "broken" to fix

I've long suspected there's a link between carbs/sugars and the autism (with no proof). My relative is a total carb addict, with all the addictive behaviours attached to that. Which came first I don't know

And yes I've long noticed the numbers on here with links to autism/ adhd and don't think its just coincidence .

Thanks to all who've stepped forward to support, long may it continue

 

[ravensmitten]

Definitely not rude!
You sound like you're still that person with strong beliefs you were when trying to organise that strike in school! (Which echoed some of my own experiences with organising protests in my otherwise very nice school.)
There are many, many ways to skin a chicken, and there's no one way fits all.

Most of all, you come across as understanding, and appreciating the way things work for other people, even if it's not for you!

My friend's point of view stems from her experience with young adults who have worked their way through an academic education in a system that's not particularly friendly to the neurodivergent, especially not for those who were diagnosed late, and from being a mum to a 9 year old having a very hard time not being a run-of-the-mill horse.

I do get it, and can only speak for myself. And I know my own biases, and have to constantly check them, I'm wrong often.

I appreciate her experience and will think on it when away from the furious tapping of keys and see if I can look at it from another angle.

I grew up seeing a lot of children who were cast to one side for many different reasons, almost institutionalised, on the outskirts of mainstream society, effectively ghettoed, segregated as it was easier to deal with "them" all in one place, rather in the mainstream, and coming out of that into a world where they weren't 'normal' and had a hard job getting on, not that it's easy for anyone. Which makes me wonder if those people would be afforded a set of opportunities and tools appropriate to their needs but in a more inclusive manner, it would be far more beneficial for EVERYONE as a whole. but again that was idealism and not the real world, where the system didn't have time, money/limited resources and energy for that. easier to sweep them under the carpet while the more productive members of society aren't disturbed or disrupted. Equality would end up unfair as unfairness is inherent in equality, but equity I think is achievable, I guess it is about the distribution of those resources. and maybe that's changed. Painfully aware that It's totally a hang up of mine.

 

[ravensmitten]

Obviosuly as @Antje77 says many ways of going about things, and also nothing is ever absolutely so. Sometimes its more difficult than the simplification I have in my head.

Posting again because

I just posited the zebra/horse thing with my daughter (who would usually be in bed now but she can learn for herself what feeling rough in the morning feels like when you don't go to bed early enough) without too much leading as I like to involve her as much as I can.

"I'd rather be a reverse centaur than both of them.... no NO.... I'd rather be a pterodactyl"

Now she's singing that shed "rather be a demented pterodactyl than a horse or a zebra" and is doing a silly dance in the kitchen.

That's me told then!

As I say, never a dull moment. Hard work sometimes though

 

[MrsA2]

Obviosuly as @Antje77 says many ways of going about things, and also nothing is ever absolutely so. Sometimes its more difficult than the simplification I have in my head.

Posting again because

I just posited the zebra/horse thing with my daughter (who would usually be in bed now but she can learn for herself what feeling rough in the morning feels like when you don't go to bed early enough) without too much leading as I like to involve her as much as I can.

"I'd rather be a reverse centaur than both of them.... no NO.... I'd rather be a pterodactyl"

Now she's singing that shed "rather be a demented pterodactyl than a horse or a zebra" and is doing a silly dance in the kitchen.

That's me told then!

As I say, never a dull moment. Hard work sometimes though

A laughing emoji for you, and a winner one for your marvellous daughter!

 

[ATB123]

I'm an idiot. No, really. I spent last week trialing generic methylphenidate, and I completely forgot to check what it did with my blood sugars. Checked pulse, checked blood pressure.... Completely forgot to poke!

So here's the thing. In 2005 a shrink diagnosed me with a whole bunch of things, and he pretty much got the main part of it, completely wrong. I don't have a Borderline Personality Disorder. I never did. And the anxiety, panic disorder and depression all resulted from the main culprit, which was entirely overlooked. Quelle surprise when the meds/treatment didn't work! (Which I got blamed for, being an "uncooperative patient"... You don't put an arm in a cast, when the leg's broken!) When certain things happened last year, it finally dawned on me... It's ADHD. My GP agreed, but couldn't officially diagnose nor prescribe. So... Now I've finally gotten through waiting lists and am getting help, it turns out it's not just ADHD, but AuDHD: a combo with autism. That one came entirely out of the blue, but due to some reading material I got from a friend, it immediately made oodles of sense! Palatable relief, to finally know why I don't function around people, why I can't keep our little flat in order, but I can hyperfocus on things like, oh... Diabetes treatment through diet, haha. And cats!!! I have a proper diagnosis at long last, proper help from an entire team at a psych practice.... And the first medication tried was an absolute disaster. Lots of very nasty, mostly painful side effects, even in a low dosage, including an inability to properly urinate. Try not being able to wee when your mouth is cotton-dry and you're drinking lots. As it turns out, after a week of that you can't actually walk properly anymore, because there's so much fluid and pressure in your feet, it'll make you weep to try. I'm very sensitive to side effects and usually get a plethora of them, so I'm a little worried there's nothing out there that'll actually fit me. It's so nice to have a calmer, more focussed mind though... But if it's not meant to be, I'll accept that. I'll try everything I can before throwing in that particular towel, though!

On the 22nd I'm going in for a consult to see what we're going to try next. Is there anyone here who has experience with T2 and ADHD medication? I've had trouble in the past with all types of antidepressants, alas, and now I'm worried the stimulants aren't going to be workable, but the more I know, the better. Anything I should watch out for, ask for? Supplements any good that don't mess with vein width? (Migraines....) I appreciate not all medications may be on offer here in the Netherlands, but you never know.

Anyway, thanks for the read, and any ideas one can toss out there. They're appreciated.
Love,
Jo

PS: So far I've been told that ADHD just "takes a little extra grit", and that it can be solved "with a cold shower in the morning". Yeah. Nope. Diabetes certainly isn't the only thing underestimated by the public at large!

Nothing to say about ADHD meds but just wanted to say I recently read a book called Dirty Laundry by Richard and Rox Pink, a husband and wife team. She has ADHD and it was divided into 10 areas ADHDers struggle with and written from both their perspectives, and all they did between them to help her to manage her diagnosis and realise that she wasn't broken as she thought she was. I thought it was excellent, and learned a lot about ADHD symptoms, living with and managing them. Don't know if it would help you but just thought I would mention it! They also do I think podcasts or vlogs which are really good.