ADHD, anyone?

ravensmitten said:

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.

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I just read everything you wrote, doing some catching up this morning... It's a lot, eh. To be getting on with. From what I gather it's easier to get an assessment when you're young, than when you're an adult. Shorter waiting lists and more experts on hand in that age group. So if it's something to get out of the way... I don't know if your pterodactyl needs to officially know, though, seems like they have a very good sense of self, likely thanks to a certain parent who knows their own mind.

Speaking for myself.... I never fitted in, for now, obvious reasons. After every single social interaction I was lectured about what I'd done or said wrong (with the best of intentions, but still), and there's a lot of social interaction when a kid goes to school. I was very outgoing before I went to kindergarten... Then I shut down. Because everything about me was wrong, I couldn't get anything right. That would mainly be the autism, I suppose. It was the ADHD's Rejection Sensitive Dysphoria that made me feel like I just shouldn't be there. Going to school was extremely stressful, with my mind running at a thousand miles an hour. I wasn't running around: I was constantly absolutely exhausted, and trying not to stand out at all. Low vit D, iron deficiency, all of it got supplemented, and yet, I still couldn't keep up. I've been called lazy, a liar, layabout... When I physically and mentally struggled every single minute of every single day, to just be here. I can't deal with people, so the journalism degree I have is absolutely useless. Even if you do work from home and just write opinion pieces, reviews and the like, you still have to deal with an editor and the financial department at a bare minimum. And I really, seriously, just can't. Drive? If a bird of prey by the roadside is as much a priority as the car suddenly braking in front of me, not a good idea. And I can't guess what other drivers will do, so that's always been a no-go, even if it didn't require going to classes and having an instructor to interact with. All my life I was blamed for just about everything. Not smart enough, not living up to my potential, not being social enough, speaking too much and oversharing, being too present, being too quiet, being a stuck-up snob who wouldn't speak, being a disappointment. Nothing I ever did was right. And the people who were supposed to help me, never actually listened. Just lay more blame. Because what i was telling them couldn't be true, because it didn't fit their (wrong!) diagnosis. The meds weren't working, so I must not be taking them. (A year and a half straight of suffering debilitating migraines; I was taking them, and they still left me depressed, but noooo... I must be a liar!).

So after over 40 years of being told I was one big bundle of personality flaws brought on by sheer laziness, I now find out, and have actual measurable proof, that there was nothing I could've done on my own about any of it. I have a malformed uterus. I don't have a frontal sinus cavity, just brain and bone there. I can't do anything about those things either, they're just how I'm built. And I am neurodivergent, with a double whammey. Also something I could've done nothing about. Not as a 9 year old, not as a 12 year old, no matter the pressure to actually just finally fit the mold... They weren't flaws I could fix with just a bit more effort. I made an effort, it's always been an effort, every single day of my life, just trying to literally survive my own very destructive thoughts. Which have been basically, me longing for death since I was 4, because I just wanted some peace and quiet. Just, finally, some rest.

Since february 5th, the day I got my diagnosis, I could let go of something that was very powerful, and I didn't realise just how much it was weighing on me. I still can't say I like myself, but I can say, in all honesty, that I have at long last, managed to not hate myself anymore. And I have, for so very, very long, and it went very, very deep. Understanding what I am, why I feel the way I feel, why I do the things I do... It's okay. Even if the meds are a bust and I just remain, well, me... I can accept who I am, now. Only took me a lifetime, and a weird set of tests.

So... If your pterodactyl is fine with who she is, then that's absolutely wonderful. But if you think she may struggle the same way I did, maybe getting a little label isn't so bad. Like with the diabetes, we're all different, what works for one might not for another. To me, it's been life changing. For her, it might be of no consequence at all. I think you'll know what to do, no-one knows your kid like you do, after all.

Good luck, and thanks so much for all your input!
Jo

Antje77 said:

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.)

View attachment 66309​

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.

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<3

ATB123 said:

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.

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It's on my kindle, ready to be read! Thank you!

ravensmitten said:

I read something recently with someone who struggled to get a diagnoses as an adult, not surprisingly a woman in her late 30s where it wasn't picked up on, she was just a "character." which made me think more about it. Recently had a family friend fight tooth and claw and finds out she has ADHD/Autism, and she said it was far more difficult because her parents and teachers didn't suspect it as she just put her head down and suffered silently. Both of these combined with your story are helping me see sense.

These things affect us all differently isn't it



This is why I have to distance all my own preconceptions isn't it

also I think I read into the zebra thing a little too literally, lol. but I also don't think things are always as absolute

Maybe I'd hope to think some things have changed over the years, and differences are more than just 'tolerated' now, who wants to be just tolerated? pffft. Ultimately, I know there are always going to be people and places and situations where the time resources and compassion aren't there.

I had a bit of a rough time being a little bit different before I accepted any of this, and even I get it wrong, I have to prepare a child for the road somewhat and I know what the road can be like, so some resilience can help. Acceptance and compassion and kindness is key, difference is seen and celebrated in our house (even though I think that's this is my natural mode, but also I guess that's cause I've had a long while to come to terms with stuff like this as well)

Even now I think that might sound a bit self righteous, but it is what it is, and more helpful than harmful for us.



I didn't quote all of this, but read it with a knowing feel, even down to the driving thing, less so much on the autism/social thing, I think a lot overlaps though. I remember having an existential crisis at the age of 4 and a half wondering if everyone going about their business was having the same.

I'm ever so sorry you had to go/be put through any of this in your childhood and also not receive the tools/guidance/support you may have needed. It seems you've had to find a lot of strength over the years.





Okay, right.. reflection... I realise my comment before was now from a privileged position, that I *did* have the opputinuty to know from a lot younger age, and that not knowing lasted a lot shorter time for me from around ages, 4-7, although of course back then having the label meant I "was" broken as people still didn't understand. But I guess I had a lot longer to came to terms with it while you and many others never had the chance to. And what with the double whammy it must be quite the revelation, to get that load off your shoulders, which doesn't make it magically go away, but I guess as now you can come to terms with that. Got it.

This isn't' aimed at you, I'm thinking associated thoughts out loud.

I feel horrible about this but I played the "hyperactive card" once. I once stole, (yes I know) a packet of stickers from the local newsagents, not even thinking about it, I picked them up and ran out the shop, the lady who sat near the door grabbed my arm and I blew a raspberry at her and said "I'm hyperactive I can't help it". she replied "your a*$e will be hyperactive by the time I finish with it" as funny as that sounds now and it *was* heat of the moment stuff, you can see that I couldn't use it to my excuse my behaviour to others, so maybe that was a formative lesson for me that even though I was truly sorry and I did it without thinking, not out of malice, people still didn't understand or were ignorant (and I mean in the sense that ignorance can be fixed).

That's a lot different from being able to square it with yourself and I think it can let us off the hook with ourselves as long as we can reflect on any behaviours and find ways to manage and cope with them in a helpful not harmful way.

So I guess knowing, might have helped in some way, hard to know cause I didn't know the alternative for long.

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"Just associating thoughts out loud".... Yeah. I get that. For me it's not exactly a get-out-of-jail-free card, just means something like, I can forgive myself a little for my many, many foot-in-mouth moments that the people I dealt with at the time hadn't even noticed, but felt like stacked-up-over-the-decades capital crimes to me. I can't remember from a test whether two seconds before I saw a red square or a blue dot, but I remember exactly what sort of stupid stuff I said when I was in kindergarten. While it's kind of the job of children to say stupid stuff!

Also... And this is a big one... Once upon a time I was engaged to a very deeply troubled man. I loved him more than anything, when he got some mental blows, well.... He was Canadian and in Canada, I was back in the Netherlands getting the paperwork ready on my end for us to get married. I got his last letter, -pre-internet times- begging me to come back to Ontario because he couldn't cope on his own, a week after he decided life just wasn't for him. By that time his sister had already called me, and funeral arrangements had been made. "Please come home." ...When 'home' was dead, and about to be buried. ...I understand why he did it, knowing his background and problems, but I also tend to blame myself. I was just barely 18 at the time (he was 24 and 11 months, to the day), and there was no way in hell I could've made a difference in his choice. That's my biggest failure right there, the one that'll haunt me until the end of days, basically. I don't know whether I'll be able to forgive myself for that one, as I can now, finally, forgive myself for silly but invariably harmless things I spewed as a child, teen and adult in weird social situations. But I now do understand why I couldn't help him, not without proper help myself. I also understand why I loved him as insanely deeply as I did, and I am grateful we had that, and that he knew how loved he was, even if he felt he didn't deserve it, and I was supposedly better off without him.

It just helps to understand myself. My actions, my inabilities, my faillures. It explains so much. So some things I can forgive now, some I can't. Not yet, anyway. But it's a load off all the same, you know?

Talk about just associating thoughts, eh...
Anyway, thanks for, you know... Sharing. (And I am sorry, but the hyperactive a*** made me laugh!)
Jo

Bit of an update: The meeting yesterday evening went well. I respond to short acting methylphenidate on all levels: metal clarity, yes, but also a mass of side effects. So... I'm due for some blood tests to check my kidney function next week, I dropped off a sample at the GP's so they can check whether not being able to go to the toilet ended up giving me an infection or no (I don't think so, but the nurse wanted me to make sure), also made an appointment with the GP to go over my test results... Added in my annual HbA1c a bit early as well, now that I'm at it. And go over some suggestions made about medication.

Methylphenidate worked like a charm, it also kicked my behind with the side effects. So I'm going to be put on a long acting variant, and they're going to check with my pharmacy how they feel about me halving the normal dose to start off with at least (some are breakable, some are capsules and can't), and whether to do them daily, every other day or just when needed, etc... First I have to be rid of all excess fluid though, -there's still a little swelling, but nowhere near what it was like before!- and the bladder pain has to be a thing of the past as well before I start something new. So I'm going to get a check-up, and by the time all that's done, I'll speak to the nurse again on the 7th of March, and see what she, and the GP, and my pharmacist, and the shrink have come up with as a plan. Isn't that just a miracle right there? All of them being asked to be involved?!

...Also, and this is a rather big one for me, she suggested a certain form of therapy for me. I'm not a therapy person because it means having to talk (to people!) , but it's geared at learning coping strategies, how to plan, how to keep house and whatnot without getting (too) overwhelmed. The Sweepy app was already helping there, and a calendar I've been using for a year or two, but.... I think I'll accept the offer. I'm scared because aaargh, humans, but it's practical, useful stuff, not some deep-dive into my psyche, so.... Yeah. I might be up for this. And since it would be online, maybe she can put a filter on that makes her look like a talking cat or something. Cats, I can do, haha. (Just kidding. It's true, but it's not something I'm going to be asking for. Wouldn't dare!)

Bit bummed about not being able to dive right into it, but relieved I get to have a few weeks to recover from the side effects. And this time, I'll poke!!!
Jo

Angela64 said:

Interesting, had a brother with apparently Schizophrenia but had Autism but too late in age to diagnose. I’ve been reading and think I’ve probably ADHD, ADD whatever, but my counsellor says getting a diagnosis isn’t helpful

is it now too late, heading for 67 in May

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There's people getting diagnosed well into their 80's, so why not? If you think it might help, through meds or practical training or whatever, and you don't mind jumping through some hoops to get it.... Might as well give it a go. I mean, I'm not exactly a spring chicken at almost-45, right? Do whatever you think might be helpful to you!

Angela64 said:

Interesting, had a brother with apparently Schizophrenia but had Autism but too late in age to diagnose. I’ve been reading and think I’ve probably ADHD, ADD whatever, but my counsellor says getting a diagnosis isn’t helpful

is it now too late, heading for 67 in May

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By the way, my GP initially said that there was no need to go after an official diagnosis, I just needed a little practical help with my home. Because I was "doing fine".

I looked fine, to her.

No job, no drivers license, never finished proper school, (got the journalism degree from home) a hard time with relationships with friends and family (and a whole lot of trainwreck romantic relationships before Kornelis came along in 2005), always alone, always lonely, but not able to be around people either, marinating in self-hatred. Yeah, I was just dandy! Masking so well she didn't see how bad things were, is all... Which we talked about, and then she did everything she could to help, as she always does. So decide what you think might be right for you. Your counselor, try as they might, cannot look into your head.