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SN children

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Original poster

do you ever feel guilty about the past

39 replies

2shoes · 23/09/2007 11:37

cos I do. I left dd in hospital when she was born. and didn't go back until she was 2 days old. (she was out of it doped up and would be touched)
then when she had her first big fit I left the room when they took her catheter out.(ok I was sick covered)
but for some reason I still feel guilt.
anyone else?

OP posts:

ShinyHappyPeopleHoldingHands · 23/09/2007 11:59

I had DS when I was 20 and he diagnosed with CF at 5 weeks old. When he was admitted into hospital with a cold (!) at 6 weeks... mainly because I was so panicked about the diagnosis and we'd been given "open access" to the ward, I used to leave the room and DS in my mum's arms while they "suctioned" all the snot out of him!

How pathetic! I had a lot to learn!

Feel a bit guilty about that now still.. even tho DS 15 now..

Original poster

2shoes · 23/09/2007 16:56

thanks shiney
I feel better knowing it is not just me and for sharing it.

OP posts:

InMyHumbleOpinion · 23/09/2007 17:05

when I remember how I didn't take ds1 to toddler groups, and was a bit depressed, and maybe didn't push him like I shoud have done ... then he was a year and a half late to speak. Stil has 'moderate ( like, wtf does that mean anyway???) speech delay'.

Did I cause that? I don't know. But I don't think I'll ever forgive myself, especially when I see how it's impacting on his confidence with other children.

InMyHumbleOpinion · 23/09/2007 17:06

2shoes the thing is, you'd forgive a friend for doing it, so you should forgive yourself.

needmorecoffee · 23/09/2007 17:23

Gosh, so many things. dd is brain damaged and has CP. Was it the migraine drug I took at 14 weeks? Flying at 31 weeks. Or maybe not pushing her out fast enough?
Then I did leave the room when she had a lumbra puncture and there was a day after she had an MRI at 1 week old and we were told about the brain damage that I actually wished she would die.
I also have 3 other kids with a whole catalogue of guilt about, especially my 15 wholeft home last janruary and I still don't know why plus how much their disabled sister has affected their lives.
Some days I feel so much guilt.

TotalChaos · 23/09/2007 20:00

I feel for all of you. Guilt sucks. There are things I'm not proud of too.

IMHO - don't blame yourself for the speech probs. Yes me (and DH!) could have talked to DS more and let him watch TV - but DS clearly has big difficulties in use of language etc in a way he doesn't with figuring out other things. The fact that he didn't improve at nursery convinced me it wasn't all my fault iyswim.

coppertop · 23/09/2007 21:50

I feel guilty that I didn't realise sooner that ds1 was NT. I feel worse when I see how much progress ds2 made with early intervention and wonder what difference it might have made to ds1. I feel particularly bad about the fact that the EYI team spotted in just a couple of minutes that ds1 wasn't able to use his hands properly when I'd known him for 3 years and hadn't twigged at all.

saggarmakersbottomknocker · 23/09/2007 22:04

Oh God yes.

I feel guilty that I didn't realise dd was so sick.

I feel guilty that I didn't push hard enough at the docs/hospital.

I feel guilty that my GP was an alcoholic, that I didn't have a clue, that somehow I let him, let me down (Why do I feel guilty about that FFS?)

I feel guilty that when they eventually said she was seriously ill that I was overwhelmed and left her at the hossie with dh.

I feel guilty that whilst dd was a long term stayer in hospital that I was absent from the lives of my two other children.

I could think of more I'm sure.

2mum · 24/09/2007 17:07

Yeah i feel guilty about the past. I feel guilty for my reaction to my ds2`s autism diagnosis. i took it badly it took me many months to deal with it. I wish i could have coped with the news better. I feel guilty about a lot of things.

anniebear · 24/09/2007 17:20

I felt bad for going and buying a new kettle (ours had broke) when Ellie was very very ill in hospital!!!

I look back now and think how could I have gone to Asda and buy a kettle?!!!!!

I also feel bad for wanting them (twins) to be born before 12 whilst I was giving Birth on Aug 31st in the evening

so they would go to school quicker!!!!!

How I would love that extra year now Ellie wouldnt be so far behind

anniebear · 24/09/2007 17:24

sorry, mine are a bit silly compared to everyone elses!!!!

FioFio · 24/09/2007 17:24

This reply has been deleted

Message withdrawn

mymatemax · 24/09/2007 18:12

Oh yes,
guilty that I left ds2 in SCBU for months when I was discharged & didn't stay with him 24/7.

guilty that I spent so long away from ds2 while at the hospital with ds1

guilty that somehow I caused ds2's distress at 28 wks, did I work too hard? Was it because I was stripping wallpaper?

Guilty that I missed ds2's first day at school because ds1 was back in hospital.
Anniebear yours aren't silly at all - I can remember feeling very bas about going to TESCO when ds2 was in ICU - I wanted to explain to the woman on the checkout why I was there!

Charlee · 24/09/2007 18:21

SHP - I have left DS in the room with my mum for his blood tests in the past because sometimes i just can't hack seeing the dr's hurt him, (he is a nightmare to take blood from)

Original poster

2shoes · 24/09/2007 18:56

anniebear i went to primark when they were taking the catheta out.......ok she had been sick all over me. but i could have waited 5 mins

OP posts:

anniebear · 24/09/2007 19:28

Oh I am glad!

It is always something I think about

Most people stay in ICU 24/7 and we went to Asda!

Then again, you were not allowed to stay overnight anyway

and I supose we had Grace to still look after and food to buy! (maybe not a kettle though lol)

Cappuccino · 24/09/2007 19:30

I feel guilty for not doing physio every minute of every day

twoisplenty · 24/09/2007 22:48

I'm so pleased this has been raised. Because I feel very guilty every day, that I didn't do enough for my ds when he was very young. The physio would tell me once per month what exercises to give him, and how to play, and I was in denial and completely overwhelmed (pnd). But no one in my family would help me. So I always feel that I have made him worse.

But I know - what's the point in feeling guilty, it doesn't change anything. But I do.

Someone recently told me that I was a good mum, but I honestly don't believe them.

TotalChaos · 24/09/2007 22:49

I feel the same about DS and speech/social stuff Cappuccino. Do you find there is triumphant self-help literature on the lines of "I spend 20 hours/day doing X/Y/Z with my kids and it worked, they caught up 10 years in 3 months" - ok slight exaggeration but...

OrangeMoon · 24/09/2007 23:39

I feel guilty about my dd's birth, i had her at 28 weeks, no-one believed i was in labour even when my waters broke all over the hospital floor, i often feel that if i had shouted, yelled or screamed and demanded to be checked that maybe they could have at least tried to have prevented her birth, would't have stuck me in a cold bath of bubbles after my waters had broke and wouldn't have thrown me onto the bed when her head was ready to come out, then perhaps my dd wouldn't have cp.

needmorecoffee · 25/09/2007 10:49

know what you mean about the physio. I feel guilty that we haven't been to Hungary to the Peto Institute, that we haven't made it ti BIBIC yet or the Scotson technique.
But we don't have any money because DH had to give up work to be her carer ( have MS).
so I feel guilty that everyone else is doing these techniques and maybe my daughter would be able to move an arm if we did these things 20 hours a day too.
And most of all I feel guilty that I don't want to hold her 20 hours a day and do the physio type things. I want a break.

Cappuccino · 25/09/2007 12:17

we go to Bobath Centre for physio weeks occasionally

and we get home and go 'gosh, what fantastic exercises! Aren't we psyched! Let's go buy all the equipment and really go for it!"

And then we watch the massive gym ball roll about the house for a few months

needmorecoffee · 25/09/2007 12:47

A lady I know with a child with CP spent months in Russia doing conductive education type things and evertime I see her she has her ds held in a sitting position or doing the exercises as we chat, Its rather distracting. But then I feel guilty that I'm not doing it too.
Having said that, her ds is forced to do this stuff 12 hours a day and to be honest apart from some strength in head control I've seen no marked improvment. He's notquite as physically impaired as my dd but he still can't sit/roll/hold an object. And his twin, who is NT, is pretty much ignored.
Another guilt is that the last 3 years have been all about dd. So many hospital appointments, 4 hours a daytrying to get food into her, 2 hours on meds, endless phone calls plus constantly saying to my other 3 'we can't do x because of dd'. So I gave my eldest lots of freedom and was pleased shewas at friends houses a lot and went on camps and too parties (she's 15). I thought she was having a great time. Turns out she felt rejected in favour of dd2 (but not being a mind reader I thought when she said she was fine and happy that she was) and left home 9 months ago. I was so exhausted and fretting about dd2 that I didn't give dd1 enough attention. I did try and take her shopping and take her to Paris and take her on every camp she wanted but it obviously wasn't enough or she wouldn't have left. The guilt over failing the eldest will never go and the sorrow that she left home at 14 and will never come home and I'll never get that time back breaks my heart in two.

Cappuccino · 25/09/2007 12:51

oh darling you are not failing

she's only young and things may well change

it's incredibly hard as it is having an SN child and you have MS as well?

you should be really proud of yourself for just keeping everyone fed and safe; you can't feel guilty. Surely as long as you keep the lines of communication open and be there for her there's still hope that things will improve

Sidge · 25/09/2007 20:24

Oh God I feel guilty. Less than I did in DD2s first year, but still guilty.

Guilty that it was my duff egg that caused her genetic disorder. (mad I know)

Guilty that I fell off a (low) window sill at 34 weeks pregnant, which probably caused my placental abruption.

Guilty that I used to go and sit in another room upstairs for 10 minutes, leaving her immobile on the floor because I just needed 10 minutes away from her

Guilty that I let her watch so much TV when I was pregnant with DD3 as I had such bad morning sickness (more like all day and all night sickness!) that all I could do was lay on the sofa with a bucket.

I guess the guilt never ends, I am sure I will always find something to feel guilty about.

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