To post my DS1s long awaited ADHD diagnosis on FB

[Minecraftnemesis]

(Have NCed as I might do this in RL)

Is this over sharing? I don't know. I'm fed up of feeling paranoid that everyone thinks I have a naughty and out of control child.

I'm fed up of being embarrassed at him being unable to control himself.

Fed up of having to pretend we are a normal family and our kids 'go to bed' at a reasonable time (and that I don't have to spend every evening taking him back to bed, listening to him jumping off his bed over and over, stopping mayhem upstairs, and being woken in the night by an upset child who doesn't like being the only one awake)

Im also fed up of saying I'm ok when I'm not at the playground. I have mum friends who have kids the same age and I've only recently really realised how different their lives are to mine. I can't really answer 'no not really' without starting down the whole road of how it really is - and there's not often time for this anyway.

I even find it difficult to talk about it when they are sympathetic because if they say their DC also finds it difficult to concentrate and so on I feel I'm trying to trump them by telling them what it's really like here.

I don't meet up with other mums for days out often because I'd be continually trying to control the DCs and embarrassed at how ineffectual it is. We don't have people round for dinner because DS1 would be jumping on the ceiling and up and down and we wouldn't relax. We don't go to other people's houses with the DCs either for this reason.

I feel like I've unconsciously limited the whole of our life with children for 8 years really. And blamed myself. And thought it was 'normal' for him to be like that. And thought I was making him behave like that. And thought that people think I'm an over protective mother because I have to hold DS1s (8) hand when we walk down the road so he doesn't run into it ( a real risk- he tried to pick up a conker from the road as we walked along yesterday and punched me when I held him back).

I feel that maybe if I put it on there it's then 'out there' and I don't have to be all coy about it. I really believe in honesty and being open about what you're going through in mental health as well as other healh issues. If he had a mobility issue or something more tangible I wouldn't think twice. What did you/would you do?

Slightly venting here as an alternative to doing it on FB really

I know someone who gives a detailed account of the daily challanges they have with their SN child, often with photos.
I thinks it's a terrible invasion of the child's privacy.
I've never even met the child but maybe it's more appropriate if your friend list consists of actual friends rather than random people.

Some very supportive comments actually from a close friends section of my friends. I have one friend who has been supportive in other ways who stated ADHD was not a disease but a 'collection of behaviours' when I initially spoke to her about it. That upset me a bit, but on reflection what is any condition other than a 'collection of symptoms' unless there's an actual pathogen

I was and am very open about my childrens' Tourette syndrome. It started very suddenly and severely in both of them about a year apart - to do with the onset of adolescence.

Like you, I want to be open about it because there is nothing to be ashamed of and their suffering is immense. My children want to be open about Tourettes as well.

Unfortunately being open has only brought me more stress - my mother has been very rude about the diagnosis and my need for support. My other siblings ignore or minimise the issues. Friends don't understand - because it is difficult to understand unless you are living in these situations. These people are intelligent and you would think they could try and empathise.

A very few people do ask after the children , and will chat about their illness. I also have had people reveal their own stress that they live with - and that feels so human and real.

So I would disclose - but selectively - and be prepared for people to totally not understand. I push the concept that Tourettes is a neurological disorder and is an illness in the same way as any physical illness. Because most people can control their behaviour they just can't understand why some people suffer from an illness that stops them controlling themselves.

I feel very lonely at times and it is very difficult to live with chronic illness. I keep going by living in the moment, and staying in contact with lots of different people. That way I can talk a little bit about the stress we live with without boring a few individuals senseless and driving them away.

The one thing I take comfort from is that my children are doing reasonably well despite their Tourettes and we are a happy stable family. I think you have to appreciate the little moments in these situations in order to get through.

do people who don't think sharing a neurological diagnosis also feel the sharing of other disabilities is indiscreet?

The diagnosis my DS received was one that is "behaviour-definded", so if the behavious is changed, then that diagnosis no longer applies. DS had eight years of treatment, and his behaviour is quite different now. So the diagnosis was not permanent. Maybe that makes a difference?

DS still has to work to control some things, but I don't think a very public announcement some 15 years ago would have been the best thing in the long term.

But I can completely understand OP wanting to shout it from the rooftops right now.

I think the difficulty is that if somebody's behaviour stands out, not having a diagnosis isn't going to make people more tolerant.

I would be all in favour of explaining things to various people on a one-to-one basis.

I wouldn't post my partner's ADHD diagnosis on Facebook anymore than he would post about my impaired hearing.

Neither of which are secrets, but announcing the details of other people's medical details isn't what I would consider to be appropriate. If they want to that's up to them.

Just to say that I've had some lovely comments today from the selected group of FB friends I posted to: so a good compromise. At least two disclosures of mental health problems in their own lives I didn't know about, and more than one message asking my advice!

I really think we need to start getting these things out in the open. It's been such a big thing in all our lives and I'm fed up of hiding it.

Worth sorting out group postings and then you aren't 'broadcasting' (I have a 'close friends' one).

I am glad you have got a good response so far! I hope everyone continues to be supportive.

OP I completely agree that things like this need to be brought out into the open.

It's amazing how many things you can look up on the internet, groups you can find, that report similar issues as you. You're not as alone as you think you are!

I have no advice op but wish you well whatever you choose to do. I also wish you all the best for you and your family

Delighted you got a good response.
I'm pretty open about my child's ASD/ADHD diagnosis. I have a core set of friends that have children with SN that I can completely relax with and others where I try to present a more 'normal' face but I still talk about it with them if it's pertinent.
No point in pretending there's nothing up!