Here are some suggested organisations that offer expert advice on SN.
tired, fed up, is this my life for years to come??(21 Posts)
Ok, beware, I am ready for a big moan, so turn away if you wish!!!
I am so fed up, had yet another (what's new) terrible night with Ellie. I end up screaming at DH through the night as we are up and down to her that much.
I am so so tired, I am only 33 (ok, a month off 34 but 33 sounds better!!!) and I feel as though I have no life.
Don't get me wrong, I have a good DH and I do get some time to myself. I feel bad for moaning as I know some have it much worse and not much support, so I apologise.
But I just feel my life consists of everything being 100 times more difficult because of Ellie. I love her very very much, but just everything is so hard at times.
She is having so many tantrums and the other day ripped a clump of Graces hair out. She had already screamed on and off for two hours, so at that point I just sat and sobbed..
On a Wednesday morning I just have Grace for 3 hours and we have a lovely time. Can do whatever. On Wednesday we went to a garden centre, she pushed a mini trolley round, we choose some plants and went in the cafe. It was lovely. But I come away thinking, that's how it should be. Then I feel bad because its not Ellies fault.
I really do look about 20years older than I am. Looking in the mirror is a wrinkled, lined old grumpy woman with big bags under her eyes.
I just wonder how long I can carry on like this, really don't know how DH and me are together sometimes!
Just seems no light at the end of this horrible tunnel.
Don't get me wrong, we do have some nice times. We have a great weekend at a farm park (had some family with us, so the help made it easier), then went to a park later on and Macdonalds. The girls were fantastic and we had a lovely time.
I thought "That's what it must be like for the other 95%"!!!
Thanks, again, for listening. Sorry I am a big moan
sorry, just read, and that was a long moan!!!!!
Anniebear - any news on any respite?
Are there any local charities that provide respite care for kids with complex needs, that would be able to advise you on who can help even if they can't? What about Direct Payments from Social Services (accessing help from SS is a nightmare though, apparently my dd with CP, dev delay & visual impairment is just like any other one year old to look after - according to SS that is!)?
I'm sorry if I'm asking too many questions, but we've just been awarded a little monthly respite from a local charity, but I had to knock on quite a few doors to find out about them.
I think you should book yourself in for a good old pamper when the girls are at nursery, even if it's a simple as a big soaky bath and reading a copy of Heat whilst scoffing half a ton of cake. It does wonders for me
PS - you're not a big moan, we all have days when we wish it was easier.
Blimey, we ALL feel like this from time to time, Anniebear. You are NOT alone! I think one thing springs out from your post- that you had a good time at the farm because you had family with you. It's very, very hard to go out with two children when one has SN. Infact, I physically can't do it. Am warming up to attempting the park this summer! You need more support and more pairs of hands.
ps When Ellie has tantrums how do you respond to them? I try and ignore complete meltdowns (ie: I know there's no reason) and DD does eventually calm down and THEN I give her attention. If I feel she's 'revving' up I try and 'prevent' a meltdown with music etc and things she finds comforting. Sorry if I'm stating the obvious!
I know what you mean Anniebear, there have been more and more times recently when I've felt that I'm just a carer to DS and not a parent . And, although much of the time things are fine, its those stress points and bouts of terrible behaviour that are so difficult and stressful that spoil everything else.
JakB is right, you DO need more pairs of eyes and hands, its a simple and practicl as that sometimes, understanding and support are nice but the practical managing is hard, esp for you with twins and then comparing the times you have with them too. I'm not sure that respite is the answer, although it wouldn't do any harm of course, but I think you need a lot more help with managing the problems like her screaming when you come home (other thread), the night time behaviour etc. What support are you getting with her communication? Has anyone introduced PECs or signing and helped implement it at home? Pictures might help with something like the screaming when getting home, e.g. picture of what's going to happen, say get home and take shoes off then a picture of a "treat". I think this would help a lot but its hard to do on your own, esp when you've got two to manage. What about some help at nighttime such as Melatonin or even a night sitter? HTH.
She goes to a SN School so does signing there, her speech is quite good although nothing like it should be.
We are meant to be taking photos of places we go to etc on the advice of salt, I will get around to it!! Thanks
Have had an assessor round yesterday as we asked for a SW back in Oct!! Of course Ellie was lovely and the lady thought she was sooooooooo cute and lovely!!! She said she did believe me though!!!
Also having a lady from the complex team out on Thursday, after I asked for help with her behaviour, last Oct also!!
Also am waiting to hear about the Direct Payments!
I find it hard though, I wish we had asked for respite as soon as we came out of Hospital when she was nearly 10 months. It would have been easier to hand her over to somebody then, particularly of a night as she didn't know anything and was still quite ill. But now I know I couldn't hand her over to somebody of a night time.
Somebody said to get somebody in but we only have a 3 bed semi, so a carer would have to sleep in the bath!!! Also Ellie would be shouting "I want Mummy"!!
JakB.you asked what I do when she have tantrums? I yell and then sometimes cry!!! Good eh, that will really help!!! I get so frustrated with her slapping her face and hurting herself and I am so tired that I end up yelling sometimes. Other times I will sit her on the bottom stair.
Last week I tried a week of being calm (neighbours must have thought we'd moved!!!) and tried distraction, ie I ignored her and picked a toy up and played with it, but not talking directly to Ellie. But that made her worse and she shouted at me even more! So then I ignored it, or tried to calm things down before she went off on one. Did work a little but we felt like we were walking on egg shells all week and I finally cracked (no pun intended!) after 5 days and yelled again.
We would be a good one for Super Nanny, we would break her 100% record for sure!!!!!!!!!
Sorry, I have written an essay!!!!!
Have tried Melatonin on 3 different occassions now. Apparently it has worked in 80% of Children
Yes, we were the other 20%!!!!
Am going to ring the DR and see if we can increase the amount we gave her, but cant really see it doing anything
We are prescribed Phenergan regulary but I only give her a tiny bit, somtimes it makes her a bit more sleepy so she will go back off easier when she wakes. But I dont like to give her too muc. Although the Neuro Surgeon at Alder Hey said it wouldnt harm her.
Wonder what it must be like to have 8 hours sleep each night?!!!
anniebear....we are in the other 20 to and melatonin sends J hyper....but so does phenergan!!!!
Have you tried vallerian??? We are combining valerian with lavendar oil.....rub a couple of drops on the soles of the feet, it absorbs quicker into the blood stream if you rub it on the soles. Also add a couple of drops on the pillow.....so far we have had two whole nights of sleep!!!!!!
Makes me feel so much more human and J is a lot happier because he's not so tired during the day.
I know how you feel when you like most of us here want to crave a little of the normality that we see others enjoying.....Im having a bit of a bad time emotionally myself at the moment and wish that just for 5 mins I could enjoy what all my friends have....two boys who interact well, can play nicely without world war three erupting, a hug and a smile wouldnt go amiss....hey ho...moaning again...sorry!!!!
Anniebear - Don't really have any advice but just wanted to say sorry you are going through this the hard days are tough but hopefully the sun will come out and the days will get easier.
Whats vallerian? Is it a sedative? Does it lose effect after a bit or have any other effects? I know some can leave them feeling a bit hung over in the morning!!
May give the DR a call about it, thanks
Will buy some lavendar oil at the weekend
Thanks again, think everyone on this site is wonderful!!! When you get told about DLA, Family fund etc You should also get told about Mumsnet SN site!!!
Just realised it is from a health shop! Would a consultant prescribe it or do I have to buy?
we always seem to be in the very small minority!!!
ie, 2% will go on to have epliepsy after Meningitis.we did
Very small % go on to have brain damage.........us again
You sound like me at the moment, its hard to focus on the positive, when so much negative is going on. When its a good day its a really good one and your full of optimism and the opposite when its bad. What i love about my son being sn is his unique view of the world its so lovely when he says things other kids wouldn't say or fail to even notice and he's happy in his little world without some of the stress NT kids feel to conform. I find remembering those moments really cheer me up.
Hi anniebear, I've tried the valerian root drops (from Holland & Barratt) with dd (will try the soles of the feet method next time!) It didn't seem to leave any after effect next day, I think it's a natural sedative. Sorry you are having such a hard time - everything is worse if you are feeling exhausted and you are bound to be on a shorter fuse. I've been recommended to take dd to a cranial osteopath - it cured a friend's son's sleep problems. Not sure whether to try it as it's not very cheap, but it might be worth a go??
read about cranial osteopath, but read that the younger you take them the better. No way would Ellie sit and have her head massaged!!!!
Feeling ok today thanks!
Had a rough night, she hurt herself, not sure what she did, slapped her face and not sure if she banged head on wall or head board as she had blood on PJ's. face and head and had cut her nose and mouth and had marks on her head.
But I went out with my Mum and Dad and Grace today and Ellie stayed with DH! so had a nice break!!
Have some Valerian to try tonight, not expecting it to work though!!!
Good luck with the valerian
I'm glad you got a bit of a break today too
Sorry you are having a bad time anniebear. Any difficulties seem so much worse if you don't get enough sleep.
Hope you all have a better night tonight.
anniebear....we are also using cranial osteopathy. J is 9 and is a real wriggler but when he sees the CO he lies down and is very calm....you could try a couple of sessions...the CO told us that he sees lots of SN children and most have had massive improvements with sleep and concentration.
Hope the valerian works for you tonight....I took a couple of tablets myself last night.....zonked out at 8pm and slept right through til 7am this morning. I woke up feeling so refreshed and feel like I could take on the world now....sleep deprivation is the worst thing....its torture.
Thinking of you.
Oh dear Anniebear - I hope you all get a good nights sleep and that tonight is the first of many with valerian/lavender. I am defo gonna try this - he loves lavender oil anyway and I use it alot in the house for cuts and scrapes, so he'll be used to it.
Jayzmummy - how are you lately - been thinking of you. x
Ive been wondering how things have been for you to choc....have you heard back from the school yet????
Things are a bit hectic here....lots of problems and Ive been on a real downer....reassessment at BIBIC was a toughy for us and it has left me feeling rather raw emotionally.
Have big decissions to make over the next couple of weeks and to be quite honest my head is in such a whirl I am not thinking straight!!!!
For a while we have been concerned about a couple of things and BIBIC sort of confirmed what we were worried about.....so know we have to sit back and wait for the GP to get us seen by the right professionals so we can get things rolling.
Having BIG problems with J but will start a new thread.....dont want to hijack this one with my mad mumblings!!!!!
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