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SN children

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Original poster

This is the worst thing I have ever done

23 replies

devientenigma · 27/01/2010 04:34

ds is having his 1st night of respite. I had a phonecall at 11.30 to say he wasn't settling but at times we can be up late with him. I have been sittingsobbing wondering if he's ok. Hubby is doing a drive by to see if he can see anything. This has been one of the worst nights of my life!!! You sometimes think you have long nights being up with him but this has been even longer!!! I ust can't do it. I hope he's ok!!

OP posts:

Shells · 27/01/2010 06:28

Oh poor you. It must be totally nerve-wracking. I had a friend take DS out for 2 hours this afternoon and I spent most of it pacing and wondering if she was watching him properly.

Hope you're getting some sleep.

BriocheDoree · 27/01/2010 06:29

OH, huge hugs. It will never come to this for me (DD just not that bad) but I have been following some of your posts I'm sure that you need this. I hope that he's OK. I'm sure he just needs time to get used to it.

sarah293 · 27/01/2010 08:11

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2shoes · 27/01/2010 08:19

don't beat your self up.
dd took ages to settle at respite(she was 6) but i had to have the break)even now she will say she is homesick to get attention) give it time, I am sure he will settle in time.

sarah293 · 27/01/2010 08:24

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2shoes · 27/01/2010 08:29

if you do it slowly the staff will learn how she communicates,because she does already, your dd that is riven, but you just wouldn't be able to tell anyone how, I used to know what dd wanted, but if asked could never explain how, as it was just because I was so intune with her.

sarah293 · 27/01/2010 08:50

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meltedmarsbars · 27/01/2010 11:14

I disagree: my dd2 struggles to communicate her needs, she cannot "talk" but she has been going to respite from an early age because if she didn't then I could not cope physically or mentally. Waiting until she could talk - clearly or not - would mean her never going to respite.

I did worry a lot at first, but we have got to preserve our lives and that of our other dc's - we owe it to them to give them some "normal" family time now and again.

In a way I have got to make myself be hard-hearted to make dd2 go and to make myself leave her, but if I didn't then we would be collapsing as a family unit and my other dc's would hate me.

I do try to make it up afterwards - and dd2 does take it out on me with hair-pulling, temper, etc afterwards.

Devientenigma: this is not the worst thing you have ever done: it may yet be the best. Please keep trying!

2shoes · 27/01/2010 11:27

riven If I had waited for her too talk I would still be waiting, and seeing as that will never happen it would be a endless wait.
sometimes imo you have to be cruel to be kind, you have to have a break so that when they come back you can be a better mum(not saying you are a bad mum , but just how I felt)
of course she won't want to go, or you to leave her, but sadly our kids have to get used to this from an early age.

meltedmarsbars · 27/01/2010 11:29

I totally agree 2shoes, sad but true.

anonandlikeit · 27/01/2010 12:48

Don't be hard on yourself... Even with my NT ds I have had 11.30 phone calls when he said he wanted to stay at a friends & then decided he wanted to come home...

It can be a normal part of growing up & the carers are likely to be a lot softer with him than you!

I hope you all get some sleep tonight x

sarah293 · 27/01/2010 14:40

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5inthebed · 27/01/2010 14:42

Hope he eventually settled and you managd to get some sleep.

saintlydamemrsturnip · 27/01/2010 15:33

ds1 has been going to overnight respite over the last year (he's 10). He loves it. The staff are brilliant, and his independence has increased enormously. He can't talk but they understand him very well. He knows when he will be going, he tries to pack his case. He has pocket money to spend there and he is often taking swimming. He has sobbed and sobbed once because the cook had gone on holiday (she cooks him roast dinners)! But he was placated with fish and chips.

I won't be able to care for him until I die- his needs are too complex. I see respite as essential for his education tbh -learning to be away from the family. It would be unfair to try and start that in his 20's. It does help that he's 10 and would be going to friend's houses now and that he likes it. He likes to look at the website when he's at home.

Pixel · 27/01/2010 16:04

Saintly, that's what I feel I should be doing with ds now, getting him used to going to respite in case he has to go one day. It just seems more effort to beg for organise it than to look after him myself and I keep putting it off [lazy emoticon].

He has been away with the school for a few nights. They wanted to take him when he was 5 but I couldn't do it then. The following year I relented and it was hard! The year after that it was "wayhay, where do I sign?".

2shoes · 27/01/2010 17:52

saintlydamemrsturnip good post

FnD · 27/01/2010 18:03

Dev - how are you doing now? is he back? how did it go for him. Hope you ok. x

Original poster

devientenigma · 28/01/2010 15:11

He's back, thanks everyone, he's very aggressive (more than normal)shell shocked and quiet. He didn't sleep much, heavily soiled the bed, was defient with everything and hard work (their words). As for us I cried most of it or played farkle and uno on facebook to try taking my mind off things. Hubby spent the night doing a couple of drive bys to see if things looked ok.
I agree with Saintly and meltedmarsbars, but have to admit one of my worries (like Riven) is if something happened. He is not to get too stressed for his heart condition and they only check if the kids make a noise...I had visions of him quietly having a heart attack because he was too stressed. He also has fits and wondered what he was going through on his own. Hard but don't have to worry about that until next week when he has another night away. Though I am going to try to remain calmer.

OP posts:

Peachy · 28/01/2010 20:09

MrsT wasn't it your son (or am I wrong) that had allthe eating issues once- restricted diet etc?
Roast dinners? fish and chips?

Am hoping it was him becuase if so that has amde my day LOL

Peachy · 28/01/2010 20:10

Oh sorry Dev, crossedposts

that sounds really hard, I can understand your worries.

jubee · 28/01/2010 20:27

my sn son has only spent a few nights away from home beacuse he is such a nightmare. will only trust family and friends. My best friend has had him a couple of times, but she couldnt sleep worrying about him, bless her she really is a true friend. he has stayed with my brother and family and their kids go to bed really early, so they were shocked at being up most of the night and had to send their kids to grandmas so they could have a rest - welcome to my world - they just couldnt hack it - one thing to say we mums must all be heroines!!

saintlydamemrsturnip · 28/01/2010 21:26

devie - that sounds quite regimented. they let my son settle down on the floor of the corridor then move him if need be (he has often chosen to settle on the floor at home, so not as bad as it sounds). It is very homely. I couldn't do it without complete confidence (the manager has an adult son with SLD's herself so she 'gets it).

yep peachy. He used to eat gluten free pizzas, buckwheat pancakes and biscuits and that was it. Nothing else, no meat, no fish, no cheese, no fruit, no veg. Now he eats like a horse. Largely thanks to his SLD school. His teacher worked with him for over a year to get him eating. Actually respite couldn't believe how restricted his diet used to be when I told them because they've only ever seen him eating everything!

meltedmarsbars · 29/01/2010 14:34

Devientenigma: the hardest part might be over now - hopefully he will start to settle down more easily next time as it won't be so strange, it will become part of normal life?

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