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Struggling with this.

(23 Posts)
Sahkoora Mon 15-Jul-13 08:17:35

DS (4) has just been diagnosed with ADHD and a mild ASD. I am struggling to think about the future.

The summer holidays are looming and I just feel very trapped and isolated. I joined some groups on Facebook for people with kids with similar conditions and all everyone talks about is how amazing their kids are and how blessed they are to have this opportunity to raise a special child.

I am an awful person because I just don't feel that way. I haven't felt proud of my DS for ages. He is so aggressive, rude and violent. He ruins anything nice we ever do with his behaviour. How can I see this as anything but a curse?

I hate going out anywhere with him, and at home he's horrible. I don't drive (though I'm learning) and I can't take him on a bus (also have a 2yr old) as he just lays on the floor and shouts about how he's going to stab people.

This diagnosis is new, so perhaps it's the shock. DH works all week, but tbh, his presence at home makes DS worse. It's like he sees a challenge to his authority. I don't really have anyone to help out with looking after him as my mum works full time and DH's family live far away.

I just wanted to ask if everyone feels this way at first, and whether the stage where I think he's amazing will come later. I know it's awful and I would never admit it to anyone face to face, but a year of this, 6am to 11pm every day has made me wonder if I even love him any more.

Please don't be horrible to me, I don't know who else to talk to about this. Most of my friends say they think ADHD is "over-diagnosed" or that something terrible must have happened to him to make him want to be so violent.

PolterGoose Mon 15-Jul-13 08:43:21

Message withdrawn at poster's request.

Eyesunderarock Mon 15-Jul-13 08:59:09

On Facebook, everyone knows your name, here they don't.
So whilst acknowledging that everyone here does love their children, and they do and are amazing on occasion, we also can be truthful about how distressing, thoughtless and a PITA they can be.
How hard it is to have daily fights about things that other children just manage, and how difficult it can be to be the conduit between them and the world. How fighting everyone, including your child, in order to help them is bewildering and isolating.
My DS has AS and I do love him and he is an amazing 18 year old.
Most early mornings, around 2am, I used to have to pop into his bedroom and watch him sleep for a few minutes so that I could remember that I loved him really, despite the unbelievably horrible day.
Yes, it does get better with time, you learn strategies to cope and so does he. But it helps to have a place where you can be honest and anonymous and ask for help with stuff that you may not want your friends to know about.
It's also a place where you can scream 'AAAARRRRGG' and rant, and no one will assume that you don't love your child, or be critical of the moments when you just want to run away.
So yes, this place is a lifeline of support, ideas and knowledge, and virtual wine.
Welcome to the Goose and Carrot. smile

TOWIELA Mon 15-Jul-13 09:18:07

I agree with Eyesunderarock. On FB everyone knows who you are. I joined several FB groups, but I found it was all too glossy and painting an totally unreal picture. Since I found MNSN, I have left the FB groups alone. Here is very supportive.

My child also has ADHD (amongst other dx). It is a hard dx to have because so many people are so judgemental about it with the attitude that it's because of 'bad parenting'.

Eyesunderarock Mon 15-Jul-13 09:35:37

I'm on FB, but I've never belonged to any groups. I've 'met' friends online who have children with similar issues, then we became fb friends. I use the PM system there as well as chatting openly.
It's hard enough keeping your mask on for people IRL, you need a place where you can let it all hang out without feeling guilty.
ADHD is often not well-handled in school either, and the playground mafia is always tough.

autumnsmum Mon 15-Jul-13 10:03:00

Don't feel guilty .I have two dcs with autism and my daughter who is three can be extremely challenging .please don't feel guilty about the way you feel

Nerfmother Mon 15-Jul-13 10:28:19

Hi. Take a peek at my thread on ds and anger in sen. Not sure how much his amazing mess comes through! Why not start with the baseline that yes you do love him, that's a given, but you can't enjoy him right now? There's a difference. It's only recently really that I've found ds easier to think of as brilliant because I've realised that life is tough for him. And I feel a bit sorry for him - his life is a bit like a constant realisation that you've done or said the wrong thing but you're not sure why.
And if I could remove his asd I would. ( I now anticipate getting massively flamed)

ouryve Mon 15-Jul-13 10:47:35

You've nothing to feel guilty about.

DS1's lack of thought for anyone and constant ranting drives me to despair.

DS2's constant slapping and spitting and occasional screeching has me reaching for the figurative gin bottle on a regular basis.

I'm sick and tired of battles over adequate handwashing or keeping clothes and nappies on.

Love them to bits but they're bloody hard work and I don't always feel up to it. Sometimes, I just want a break.

Eyesunderarock Mon 15-Jul-13 10:49:15

'And if I could remove his asd I would. ( I now anticipate getting massively flamed)'

Not on here you won't Nerfmother. My son being an Aspie is part of him, so I wouldn't take it away if I could. But the life we have is nowhere near as challenging or difficult as many others who post here, his ASD has many positives that have helped him shape his interests and find something he loves doing as a career.
But that's our life, not yours or anyone else's in MNSN. So there are others who would remove their child's exhausting, unpleasant, painful and life-controlling disability in an instant if they could. And who could flame or blame in all honesty?
If I could cure DD's depression by magic, or selling a body part, I would.

ouryve Mon 15-Jul-13 10:52:15

And I agree that while ASD, which both boys have, elicits the patronising head tilt from other people, mention of ADHD is more likely to initiate lengthy stories about how so and so's next door neighbour's dog's best friend's cousin was diagnosed ADHD when it was plain that he drank 20 cans of red bull a day/wasn't smacked enough/played too many video games/didn't ride his bike enough.

ouryve Mon 15-Jul-13 10:52:39

Ranty DS1 is the one with ADHD, btw.

MovingForward0719 Mon 15-Jul-13 11:44:10

My son is 6 with ASD and he is a joy, mostly. But 3.5-5 it was like hell on earth. I can't imagine him any other way but yes, I would take his ASD away in a heartbeat. Why would I want to keep something that has made his life difficult and always will do. The difference in our day to day life now, compared to a year or two years ago is massive, I hope this gives you some hope.

TOWIELA Mon 15-Jul-13 11:48:42

ouryve - my son rants too. Is this part of the ADHD condition? I thought it was just my DS that did it, so good to know someone else's child does it too!

Sahkoora Mon 15-Jul-13 13:03:10

Thank you so much everyone. Everything you have said means such a lot. I definitely agree that the ADHD has been the hardest diagnosis to talk about. People seem to understand the autism and sympathise, but ADHD just means we've been too soft.

I find myself justifying it to everyone, explaining how we are actually pretty strict with DS and how we don't let him rule the roost and how a good smack doesn't make all the difference.

I hate going to pick him up from school as even though no one has said anything to me, I know DS has been horrible and violent to kids in his class as well as his teacher and I just don't know what they all must think.

I watched a BBC documentary about ADHD on YouTube last week, and all the comments were really horrible. It plays on my mind that people must think these things about my DS. I want so badly not to care and have a thick skin about it, but I think it will take a while.

I find it hard to talk about it with my mum as she is partly in denial and partly of the opinion that it could be worse as at least he doesn't have cancer.

It gives me lots of hope when I hear that this is the worst age. I think this may be the case for DS. At the moment, he really doesn't understand that there's anything wrong with him.

Thank you everyone again, it is very kind of you all.

ouryve Mon 15-Jul-13 16:46:51

TOWELIA - it's common for kids with ADHD who are hyperactive or impulsive to also be oppositional. That may or may not include rantiness! Though we do find that DS1's rantiness is more apparent when his impulsiveness is better controlled. When he's more impulsive, he's more feral and doesn't communicate very well. When his medication (atomoxetine) is at the right level to control his bouncy, "naughty" behaviour, he engages better and along with the good stuff, comes the ability to set the world to rights!

BiscuitDunker Mon 15-Jul-13 21:48:26

If its any help,my youngest BIL (who is 9) has ADHD,I knew he had it before his mum did,she was in denial and isisted that he was just "busy". He was very hyperactive,misbehaved a lot,would have the most epic tantrums,caused all manner of havoc at school and would have violent and destructive outbursts. It got to the point where MIL had no choice but to get him assessed and it came that that he had ADHD,he was given medication and he is sooo much better and well behaved now!you wouldn't think he was the same boy looking back! If your DS gets offered/prescribed some medication for his ADHD I think you'll be amazed at the change in him when he's on it smile its save my mil from pulling her hair out over him and stopped her ds from being excluded from his school over his behaviour! I hope that helps in some way. All kids are different and adhd is scary and people don't really understand it,they see it as a negative thing but its just how your child is,you can't change it,you just do the best you can and take the good with the bad. My dd has just been diagnosed with asd so I know how difficult that alone is,and in many ways that will be harder to deal/cope with in the long run,there's no magic medication to help with that like there is for adhd...

Keep strong,but if you need a rant or a maon,this is the best place for it,you don't get judged here smile

2boysnamedR Mon 15-Jul-13 22:19:45

Well I'm not happy that my son finds everything in life so hard. That I find it hard just to get him a very very basic level of help for his problems. If I could have him without his issues I would remove them all in a heartbeat. To right. My son is not his disabilty but some days I feel like his disabilty defines him, and that's horrible as there is so much more to him. But its hidden and trapped inside the things pulling him back in life

Nerfmother Mon 15-Jul-13 22:34:03

Thank you eyes, moving and 2boys.

Op, I really hope some of the posts have helped you. It's crap not to have the fluffy waltons thing going on grin

OMGGG Mon 15-Jul-13 23:41:40

my ds doesnt have adhd. i started to resent my ds for a little while because it all just seemed to get to much. i would dread waking him up to start the day. i felt awful and ashamed of myself. i hated the way he throw things at me ,hurts me and wont just listen to me, talks non stop, insists on doing what he must do, never being able to do anything quickly if we were short of time. having a meltdown in front of people. however i came to the conclusion that i shpuldnt be feeling sad for me, im not the one in his shoes, he is the one struggling and i must be there for him.
i read this on the internet and it put things into perspective for me.......
I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.

Three words we both need to live by: Patience. Patience. Patience.

View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths.

I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.

its really harf but keep posting on here...this site has been my lifeline sometimes.

2boysnamedR Mon 15-Jul-13 23:48:18

I also think that getting a confirmation of what you already suspect is like a slap round the face, it stings at the time but goes down with time. There's always the hope that your going to be told its just a phase until its confirmed. I'm still in that place so it's still all raw for me. I do remember when ds was 2-3 and even 3-4 that he was hard. I did love him but we wasn't friends.thats hard to say but it's true. Then he changed and I changed a bit too and we are in more healthy place now. I feel like we are friends and we have a proper relationship. You can love someone totally even if some days you don't particularly like them. It's easy to get those two things muddled in the fog of other stuff going on

2boysnamedR Mon 15-Jul-13 23:53:26

Also someone told me 'its not about you, what you want, what you want him to be. It's about him, it's his life'. Which again is hard as your the main carer. But sometimes I feel so crushed at his progress. Then I look at him, he's happy. In his little world it's a lovely happy place. But you have to be happy too. It's happening to you. You both will grow and change. That's not nessarrly a bad thing. That's the good thing in all this for me. I'm changing more than I ever thought I could - for the better

Trigglesx Tue 16-Jul-13 07:55:02

mention of ADHD is more likely to initiate lengthy stories about how so and so's next door neighbour's dog's best friend's cousin was diagnosed ADHD when it was plain that he drank 20 cans of red bull a day/wasn't smacked enough/played too many video games/didn't ride his bike enough.**

Yes yes a million times yes. I get so tired of hearing these stories from people. Makes me just itch to reach out and smack them sideways.

DS has ADHD (along with other things) and he is a ranter, definitely. He can be a maddening, irritating, charming, shrieking, sweet, screaming, happy, angry, confused little boy (he is 6yo).

But I try like mad to remember how confusing and stressful life in general must be for him and it helps me keep my patience easier sometimes. It can be isolating and frustrating though. It's not easy.

Don't ever feel bad about needing a rant or chat on here. Everyone is here for support.

OMGGG Tue 16-Jul-13 07:55:05

agreed 2boys

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