Crap day at the moment and crap time all round tbh.

[TheJollyPirate]

DS was diagnosed with ASD and ADHD a month ago and I am struggling at present. I have people telling me that I need to make sure I am firm with him about behaviour (work colleagues mainly)which is easy to say when you don't have to deal with all the sensory stuff impacting upon his behaviour.
People saying "he's not that bad" and comparing him with other NT children (SENCO) and DS saying "I am a fake(?) boy and I need to be sent back to heaven" during a conversation about how he had been sent out of assembly on Monday.
His self esteem is crap - he keeps saying he is stupid (he is struggling with reading and writing but is getting there now). He still realises he is different though and I wonder what to tell him about the diagnosis.
My ex-husband keeps telling me to invite class-mates round for tea. He doesn't seem to "get" that DS only wants friends round for tea so that they will play his Super Mario Bros game for him and open up the levels - he has no other reason than that for wanting them round. Of course being "different" he never gets invited anywhere and the only parties he gets invited to are the ones where the parents invite the whole class - otherwise he doesn't get any invites anywhere.

Today he is in utter meltdown mood and being very defiant - the only reason I am on here at present is that he is playing the Wii.
The class teacher tells me that if he doesn't want to do something he will NOT do it and is very defiant. Oh hell I know he is defiant - according to DS N.O spells NO! His teacher also says he is always tired - and he is because it's past 10pm every night before he falls asleep. On my work days he then has to be out of bed at 6.40am so is not getting enough sleep.

It feels like it's all getting on top of me today and I don't know what to do for the best with him. I don't want to put all the behaviours down to his autism but how do I know what are due to the autism and what are just him being an awkward and defiant little monkey? How do I get it right? What do I say to those who keep saying "you are too soft"?
I mean FFS how do they know what it's like to parent my DS? It isn't a breeze.

Sorry you are having a tough time .

Please don't listen to your work colleagues, you are right 'they don't have a clue what it is like to live with your ds' and they probably have no idea about ASD.

As for the sleep, talk to your ds's pead and ask if you can try 'melatonin' this will help him fall asleep quicker (works within 20 minutes on my dd1), it is a natural hormone which your body produces to help you go to sleep (many ASD children lack this hormone) so its not a drug.

Its hard to know if a ASD child is just being naughty or weather there is something sensory behind the behaviour, you need to pick your battles, sometimes trying to reason with him will make things worse, sometimes its best just to leave the room and let them calm down.

Always remember to find time for yourself (away from your ds).

Totally relate. Won't bore on about my circs, but very similar to yours. I am about to open a bottle of wine and some crisps in a tic, and will possibly have a good cry.

Hugs to you.

sorry you are having a rubbish time atm - some of this rings v. familiar (in our case late bedtime and fussy eating the big issues) you don't live anywhere near me do you, seriously I am sure my DS would be very happy to come and play Mario with him!

seriously - I would not discuss behaviour issues with work colleagues etc - too disheartening to bare your soul to those who don't "get it". tbh I think they must be twonks to not realise that ASD and ADHD are not a somewhat challenging combination...

Echo what others have said. I think the ADHD is more tricky than the ASD in a lot of ways - the impulsivity and defiance I can really relate to as I teach a few students like this. Does your ex husband have your son at all so that you get a bit of time to yourself. If he does, is he being consistent with things because if any child gets mixed messages its going to confuse them but if he's being lenient and you are firm then he's going to get more grumpy with you. It might be worth having a check on this and agreeing strategies. I teach some challenging kids - one ADHD + other stuff of whom has parents who are together but Dad is a push over and mum is very strong and so she gets a lot of really negative behaviour from him because he gets so frustrated being told one thing but then being allowed to do another by Dad (and she gets pretty pissed off too).

Sorry if this doesn't make any sense. I'm knackered.

Very best virtual bottles of wine and chocs to you (they are good cause they aren't fattening ) You are most welcome as well to come and join me on my virtual desert island where the sky is blue, the sand is lovely, the sea is gently rolling, and no one wants you to do anything or get anything or cook them anything.

We have us one of those boys. Lovely combination, isn't it?

I will admit, I am firm with him, (as is DH) but what I am firm about is how he expresses his discomfort with himself and the world around him. It doesn't remove the fact that he does find it hard to focus and that he appears to be almost tortured by the need to flick light switches/empty out drinks/wipe his filthy face all over the windows or whatever. I can insist he puts it right, but it won't stop him from having an uncontrollable urge to do it again.

And yes NT kids do have behaviour problems, too, so school will often find them more difficult than your son.

People who don't have a clue need to butt out and I agree about not discussing his behaviour with them, since it's only adding to your frustrations.

I'm afraid all I can offer is a glass of Bristol Cream from a bottle that's been open about 6 months. I still have some of DS1's Easter chocolate if that would help ;)

Oh your post could have been written by me. I'm so sorry you are having such a tough time.

My ds is very similar, ie strong willed and at the moment increasingly defiant and I get fed up of people telling me to put my foot down etc and even worse, telling him off etc in front of me rather than letting me deal with him myself.

"It feels like it's all getting on top of me today and I don't know what to do for the best with him. I don't want to put all the behaviours down to his autism but how do I know what are due to the autism and what are just him being an awkward and defiant little monkey? How do I get it right?"

I said the above paragraph almost word for word to my Mum and my dh at separate times today. I really struggle sometimes to know which behaviour is just ds being naughty and which is him struggling to cope and while I don't want ot punish him for things he can't help, I also don't want him to get away with things that he is able to learn and control.

I suppose its just trial and error and then building on what works, but my God its tough going through it on a day to day basis and some days it feels like its all just too hard.

I totally agree with Marne's advice to make sure you get some time for yourself (I am hopeless at doing this though so I do understand how hard it can be).

My escapism involves Mumsnet and a large bar of chocolate .

Incidentally, my ds only gets invited to 'whole class parties' as well and his 'special interest' is his Nintendo ds which he can bore for England on talk about for hours. One of his major goals in life is to find people to play two player games with him on it and he only really talks to the other children in his class that also own a ds. His favourite game du jour is Pokemon Heart Gold, followed closely by anything that has Zelda in the title.

Very un MNetty hugs to you.

Oh JP its so hard isn't it. The first year I would say is probably the hardest, as you're dealing with the DX, your child and the attitudes of some people who think there is a quick fix to your childs behaviour.

You might not think it now, but in a few weeks/months/years you will become immune to these people, and you will be able to shake their comments and attitudes off.

Have a bottle glass of wine and some chocolate.

Hello! I can only echo everyone else! Totally agree with your post! Only got dx for DD2 last week, but have known really for about a year after visiting GP. Am still struggling to get to grips, and understand how to recognise the ASD but manage the behaviour. But I am realising that none of my previous parenting experience counts and I am learning how to deal with a new situation every day. It is very hard to figure out, and we have a lot of battles at the moment too. Know what it is like with late bed, and then being tired, also dealing with the lack of self esteem and realising she is different. Tis very hard.

And work colleagues! Grr! When we were first seeking a diagnosis, I mentioned it at work - regretted it instantly. They all had "advice" and all disagreed with each other! It resulted in a heated debate between them all -I had retreated to a corner by this point and was totally forgotten while they argued with each other! I have never brought it up again, and have not told them about the dx. Just remind yourself that however well meaning, they have not been in your postition. Not easy to do, but true! It is really hard but I do avoid talking to them about it now as it only makes me feel worse.

(Also, think we should organise a Nintendo DS party BTW )

Sharing lovely glass of australian red wine!

Thank you all so so much( and extra thanks for all the chocolate and wine). There is a local Special needs and Parents Centre which I am due to visit next week. I can't wait to talk to them and use the parent library.

My work colleagues always ask about DS and being health visitors think they have answers (they don't). I am a HV too and DS is teaching me that I know bugger all about autism and that parents need support from those who know what they are talking about.

Okay, my kids aren't ASD, but they do often say negative things about themselves. It really cuts to the core, and I have certain newspaper headlines flashing through my head. (Doesn't help that DS always said he wouldn't lie beyond 14 because he'd kill himself, and he is 14 . soon.)

Anyhow, I have tried to put a positive record in their head. Telling them I love them, spotting them being wonderful and telling them, telling them when the are clever or do something well (even if its only a high score on Mario).
Also do try lots of sleep hygiene, so bed room just for sleeping, bath and bed, soft light, music?, lavender on pillow (if he can stand it). No computer after...no TV either...etc.
Do also go and talk to SENCo, she does seem good. See if she can give you advice if only where to get advice and support. Do tell her about his self-esteem issues. If there are any suitable school friends do invite them over. My son has had several ASD friends.
I would probably let him know he is different, some famous people might help.

Good luck.