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How can I prepare DS for my major op in 2 weeks?

(18 Posts)
Ben10WasTheSpawnNowWeLoveLego Sun 04-Sep-11 18:07:28

He is being assessed for ASD and we are noticing huge problems with lack of empathy, inability to appreciate anyone elses needs, impatience, meltdowns etc etc - the usual social communication problems........

I am having major surgery to remove a rib and muscle in my neck so will obviously not be particularly mobile and may well be in pain and/or not very lucid. It will be a long recovery period.

For the past month I have been trying to explain all of this but DS doesn't really care/ understand (delete as appropriate hmm). We have been trying to use RL examples ie remember when you shut the door on your thumb and had to have an operation...... remember when you cried, well mummy might be like that.........cue hysterical laughing and his assurance that his was much worse than mine will be.

TBH I am actually quite concerned that he is going to hurt me as he is dyspraxic anyway so "hugs" are often like death grips! Already he hurts me as he doesn't remember or understand that he will hurt me by grabbing me round my neck. Also he will definitely go into meltdown when I'm not able to do stuff immediately.

He is 6 and an only child. DH and my parents will be around and he will be going to breakfast and afterschool clubs every day but he can fit a lot of demanding behaviour into a v short amount of time grin

lisad123 Sun 04-Sep-11 18:15:48

i have same trouble, having heart op in few weeks. I think im going to write a social story or three grin and ask a few of the girls from DD2 SN school to help if needed.
Can you book him into afterschool club for a while to help you out?

Ben10WasTheSpawnNowWeLoveLego Sun 04-Sep-11 18:18:09

At least I only have one child to deal with Lisa smile I hope your op goes OK.

I haven't ever written a social story. Are there any websites you would recommend?

He will be going to a/s club and breakfast club every day so DH will be able to take him and pick him up as early and late as possible.....

lisad123 Sun 04-Sep-11 18:32:39

i dont use websites, but have done a social stories workshop which was great. I will ask if i can have the paperwork on hard copy tomorrow.

The rules of social stories are pretty clear. Its written from their side, you never use the words always, instead use i will try.

so it might say

My mummy is having a operation to make her better. This means she will be in hospital for x days. I will be able to visit with daddy (or I cant go to visit, but will see her when she gets home)

When mummy is home she will be in pain. It will hurt if i hug her too hard, so I will try my best to remember to kiss her cheek/blow her cuddles/ask for a small cuddle (what ever you think will be good instead)

Mummy wont be able to move quickly after her operation, so I will try and wait if she is slow, or if I have to wait for daddy to do it. This is very hard for me but mummy will be very happy if I try my hardest.

If I forget my mummy and daddy will remind me.

When mummy is feeling better she will be very happy to give me the biggest cuddle and will be very happy that I have tried hard not to hurt her.

Ben10WasTheSpawnNowWeLoveLego Sun 04-Sep-11 18:41:48

Thank you Lisa. That is really really helpful. Is it a good idea as well to put photos in the social story too? I don't know whether he will visit, I assume he will....

Ben10WasTheSpawnNowWeLoveLego Sun 04-Sep-11 18:44:18

BTW the way you have written that has brought tears to my eyes smile

Triggles Sun 04-Sep-11 18:52:37

Lisa that was brilliant. I'm nominating you for the official title of "Social Story Queen." grin

Of course you know this means we'll all be asking for your help. grin

lisad123 Sun 04-Sep-11 19:11:21

Lol thanks blush
Yes photos are great as long as relevant to the line under it.
I don't know what your ds us like but mainly its best to have no more than two sentences each page to start.
Also think about a title, get him involved as much as possible even making trip to hospital if needed and get him to take photo to go in story. Also suggest you practice gentle cuddles or kisses before hand as gentle is a hard word to understand. You could try sliding scale, of 1-10. 1 being touch of hand, 2 being linking arms, all the way to 10 as monster cuddles. Then you can say, "can I have a 4 cuddle please" grin

EllenJaneisnotmyname Sun 04-Sep-11 19:17:22

Sounds like Lisa has got it sussed! Sounds great, just needs to be simple enough for his understanding. (Which it probably is.)

DS2 has exactly the same 100% egotistical outlook. He is number 1 and still can't understand why he should be kind to anyone. But a specific social story for this specific problem could work well. Just don't expect him to transfer the empathy to any other situation! grin

lisad123 Sun 04-Sep-11 19:33:22

Nope every situation needs a new story grin

Ben10WasTheSpawnNowWeLoveLego Sun 04-Sep-11 20:03:56

Thank you again grin

coff33pot Mon 05-Sep-11 12:50:15

Lisa that story is brilliant.

You have helped me understand what they are all about. I have tried but have obviously made the mistake of writing them as "we" for family outiings etc. We are going on a trip rather than from DS "I am going on a trip with my mummy" and such a small thing can make a big difference cant it? smile

Is now going off to try and write one for school tomorrow, as soon as he woke up this morning he has already said he is not going sad And to top it all DD isnt due to go in till the next day which is not going to go down well.

Hope both of your ops go well ladies and wish you a speedy recovery. And that the stories bring the gentleness that is required! smile

lisad123 Mon 05-Sep-11 14:45:13

blush
do yell if you need a hand coff33pot

2old2beamum Mon 05-Sep-11 15:47:40

When I needed a mastectomy I was totally honest with my DD (down syndrome) 8 years but I may have been too upfront. She was attending mainstream school and on Fridays they had news and she rushed to be first and announced that Mum had her bosom cut off as she had pump! growing in it.
Seriously though I was amazed how brilliant she was. Good luck with your surgery

lisad123 Sun 11-Sep-11 13:56:45

How's the story writing going? When's the op?

Ben10WasTheSpawnNowWeLoveLego Sun 11-Sep-11 14:32:38

Ah, Lisa I knew I was meant to be doing something blush. I've had to increase my meds due to the pain but did it too quickly so I've been in a fog for 3 days. I'm out of it now so must get on,

The op is on Friday so not long now. DS won't be visiting as he has decided that it will be "too disgusting" grin

When is your op?

lisad123 Sun 11-Sep-11 15:37:50

mines next friday, my dh is staying home with the girls, i would feel better knowing they are ok.

Ben10WasTheSpawnNowWeLoveLego Sun 11-Sep-11 17:04:29

So we are both on the same day smile

He is refusing to look at the story and is only saying that he doesn't want me to have the operation. He says he won't even look at it with Granny as he reads "my cat cuddles" there!

He is at school during the day and is then going to stay with my parents over the weekend. I've warned his new teacher but I don't know whether he will react there or not.

All the best with your op Lisa x

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