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How to help ds come to terms with ASD/PDA?

(61 Posts)
LeChien Sat 01-Aug-15 13:44:10

Ds got a dx of HFA/PDA just over a month ago.
He is very angry, and feels it makes him different. He often said he felt different before, couldn't understand why others didn't feel the same as him etc.
We've explained to him that having a diagnosis hasn't changed anything, he is still the same person, it's private so if he doesn't want to tell anyone that's fine, but it's nothing to be ashamed of.
We've bought a book about PDA aimed at children, I've bookmarked the newsround ASD clip but he's not interested, won't look at them.
We're getting to our wit's end and struggling to cope, he's violent, needing to be restrained regularly to prevent him hurting himself and others, trying to get through that violence is never acceptable.
We use the 5 point scale, try to stick to a predictable routine and use lists so he knows what's happening and roughly when, we try to spot triggers and either avoid them if possible or talk them through and work out a plan if it's going to be too much. Usually these things have worked well, but at the moment he's off the scale. I think he's really pissed off that he's got autism and not sure how to help him.

PolterGoose Sat 01-Aug-15 14:03:22

Message withdrawn at poster's request.

PolterGoose Sat 01-Aug-15 14:04:41

Message withdrawn at poster's request.

mummytime Sat 01-Aug-15 14:10:10

How old is he? Does he know other children/people with a diagnosis? It helped my dyslexic son to meet other dyslexic kids and see they were "normal", which your son must be to some extent as this is a very "normal" reaction.

Is he getting any support or counselling?

LeChien Sat 01-Aug-15 14:13:00

Thank you Polter.
His interests have dwindled lately, and concentrated on guns which we're desperately trying to phase out as they tend to ramp up the aggression. The last two day's violence has been all about wanting some nerf gun sniper. We can't because we can't afford it and because we know we'd have to confiscate it due to increased violence.
He was interested in reptiles but isn't any more, I'd consider buying him a lizard <shudder> if I thought it would help! but I don't think it would.
I have tried to strike a deal that if he can let us help him to control himself and stops hurting us we could rethink it.

Did you ever get land hermit crabs?

LeChien Sat 01-Aug-15 14:15:50

Mummy, he's 10. He wants to be the same as everyone else, doesn't want to meet new people, doesn't want to talk to anyone about it.
School are referring him to specialist services, so there may be someone who will talk to him about it.
I sort of wish we'd never told him, but long term I can't see how that would work.

PolterGoose Sat 01-Aug-15 15:03:06

Message withdrawn at poster's request.

LeChien Sat 01-Aug-15 15:06:06

Yes, forgot to say we do that too, which worked well up until a few weeks ago. It does help that we're not telling him what to do though.
Hopefully it's just a phase and we'll come out the other end!

Shame about the crabs though.

PolterGoose Sat 01-Aug-15 15:24:34

Message withdrawn at poster's request.

youarekiddingme Sat 01-Aug-15 15:53:18

Hopefully it's a blip.

I found the what to do if you worry too much book helpful with DS and his ELSA worked through anxiety gremlin with him.

We have good weeks and bad weeks. Looking over it I think it's because during good weeks I get into the mindset he's over the worst and start introducing too much which sets him back again.
Tbh I think it's me that's finding it all too much ATM and feeling stuck.

We went to see the inside out film this morning which sparked some interesting conversation from DS who volunteered the information that fear and anger are the busiest emotions in his mind and he wants his Joy to do more work. sad There was also a lot about long term memory and getting rid of old faded memories which I was able to lead into a conversation about letting things go and only so much space in long term memory.
If he'll go to cinema I'd highly recommend it.

We are also in the process of sorting his room and finding space elsewhere to store boxes of toys to create a space under his bed he can go into and relax. There's a curtain over it and we are getting a lava lamp or something too.

With regards to coming to terms with it my DS was actually happy to have a dx and reason why he struggled. I need to get him to stop announcing "its because I have autism" when he's being controlling and monologoging without regard to others ideas and conversations hmm

LeChien Sat 01-Aug-15 17:31:25

Ds does try to use it as an excuse, which I'm trying to see as the start of acceptance.
I think you're right about doing too much in the good weeks, I always think I've somehow cured him by using strategies, then it comes back and bites me on the bum! (Or kicks me on the arm and spits in my face hmm)
Ds's room is something we need to sort, it's a pit of despair and at the moment is covered in ripped up paper and shards of pen from this morning's meltdown, and the door is broken from having a stool chucked at it. Think I'll have to empty it and make it peaceful.

We seem to have successfully struck a nerf gun deal, I will consider it for Christmas if we can see some effort from him to help overcome the violence, with our help, so busy reading up on calming strategies now.

Thank you thanks

PolterGoose Sat 01-Aug-15 17:54:48

Message withdrawn at poster's request.

youarekiddingme Sat 01-Aug-15 19:09:15

I totally agree about using the autism to advocate for himself - DS uses it to be an arse at times though wink I think the problem is I allow him to do it with me as I've waited years for him to speak out for himself. It doesn't go down so well (or sound nice!) when it's used as a way to control. What I need to do is find a better way of getting him to use it for himself. I'm open to any suggestions you'd like to throw my way grin

LeChein. Your - cured through strategies really resonated with me. I know I fall into that trap so often whilst she knowing there's obviously no 'cure' for autism. Unless they've found a way to retire brain pathways and I've missed it wink. Your fairy recently past the dx phase aren't you? Same here - it was May. I don't know about you but I think I've gone into a "this is for life" stage and I'm depserately trying to seek what that life will be - it's like the taken the not a prognosis a little too far the other way. Wanting the best for DS and wanting the strategies to work permanently has meant I've jumped too far, too soon. Easily done but I'm also learning to accept DS mood will affect our day to day. I'm also learning to ignore those that think he has too much control over me. Yes, I don't get out much, yes I find that frustrating - but I have to keep reminding myself I don't enjoy being at social events when DS can't manage so it's not worth it just to be able to say I did so and so.

PolterGoose Sat 01-Aug-15 20:56:15

Message withdrawn at poster's request.

LeChien Sat 01-Aug-15 21:48:00

He says he feels worse for it, I was planning on giving him the two weeks like the dr said and see how it goes. The last couple of days he's been a bit more violent, but this phase has been for the last 6/7 weeks or so, ramping up for the holidays.
He's very twitchy tonight. I'm sitting with him until he settles, he's drowsy and his legs are constantly twitching. He's always done a twitch or two, but never like this.
I'll google side effects.

I wonder if I could give him vitamin tablets and tell him they'll make him sleep - he's quite suggestible!

Thank you for the soap-boxy bit, I always find it helpful when someone spells stuff out to me! It's too easy to get stuck in a rut of trying to parent how you would a NT child, and feel that you're doing it wrong if you do it differently.

LeChien Sat 01-Aug-15 22:07:37

Aggression is a possible side effect sad
Increased seizures another, but this is just leg twitching.

youarekiddingme Sat 01-Aug-15 22:22:59

I've given DS 2.5 ml neat black current squash in a syringe and told him it'll help him sleep before grin can't hurt to try! Hope he settles soon.

Restless legs in sleep is very disturbing - poor boy.

LeChien Sat 01-Aug-15 22:34:19

Brilliant idea grin

mummytime Sat 01-Aug-15 22:45:34

Mine all got used to Lavender on their pillows to help them sleep - and there is now even some scientific evidence that it works!
It definitely helped mine overcome the anxiety about sleeping that stops you sleeping.

LeChien Sat 01-Aug-15 23:02:22

Good idea, we have some lavender in so I'll try that.

sammythemummy Sun 02-Aug-15 14:55:20

I haven't RTT (on my way to work) but I'll be etching this thread.

My dd sounds similar to your ds in that she absolutely hates being different, I've been toying with the idea of tellin her just before secondary school but I'm worried it may backfire and she may actually be better off in her bubble.

If I do tell her, my plan is to involve her in books/youtube clips/forums written and videoed by people with ASD so she knows she's not alone and also maybe she might find explanations through people who have the same experiences as her.

Hope your ds comes to terms with it

LeChien Sun 02-Aug-15 15:01:32

Sammy, if I had the last month over again I would probably do things a bit differently.
We have a book about PDA, in hindsight I should have left it lying around and let him flick through it and recognise himself, as it is, I think it came across as me trying to force it all on him.

youarekiddingme Sun 02-Aug-15 16:45:16

My DS did recognise for himself he is autistic. I told him we were talking to people to help him get along better with others (like he got at nurture group/ ELSA support at school) and trying to see if maybe the wires in his brain worked differently. (He loves technology so I used mods and adaptations as a way of explanation).
Sat in waiting room at Camhs for ADOS he was reading the board that explain autism to children. Looked at me and "that's me - I'm autistic and I think like that".

35 minutes of chatting to a clinical psychologist proved him right grin

I used to use lavender fabric conditioner and bauble bath for DS.

JazzerciseThis Sun 02-Aug-15 16:57:23

Message withdrawn at poster's request.

LeChien Sun 02-Aug-15 18:28:25

Thank you, that's interesting to hear, I'd never heard anything negative about melatonin before.
Trying the vitamins tonight and lots of lavender sprinkled around his room!

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