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SN children

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Original poster

Just feeling down

19 replies

Dee31 · 27/07/2006 19:21

hello everyone i dont normaly post on mums net i like to read all your banter and your ups and downs ,but tonight i feel the need to post as im feeling very low i have two kids on the spectrum a son 15 with semantic pragmatic communication disorder,and a daughter with severe autism severe learning difficulties ,behavioural problems and she is non verbal she is 13 and its getting harder im sitting here with my arms and face badly marked and i ache from head to foot hormones have kicked in ! or rather there kicking me in !! she started her periods when she was 11 not to many problems but since coming up to her 13th birthday its the old problem i thought we had long left behind we are all walking on egg shells twice now this week she has had a total meltdown and i have paid for it ,i love my kids to peices but im just so sad at the moment so tierd and so sad ,so isolated and so alone ,im sorry i havent ever posted before now all im posting is deppressing drivel but thats all it seems to be these day why just for once im my crappy life cant something go right i just want my kids to be happy i must be such a bad mom for all this to happen ,anyway sorry for posting i just neede to spill my guts ,thanks for listening

OP posts:

apronstrings · 27/07/2006 19:27

sorry to hear how you're feeling atm. Do you have a partner dee or are you on your own?
don't apologise for posting when your down - its really one of the things mn is here for. I can't offer you any pearls of wisdom but can be about for a bit if you need to chat... and in any case this will bump for you

redbull · 27/07/2006 19:29

hi dee31 welcome to mumsnet dont be silly you are not a bad mom or even drivel, not much advice to offer ds is 5 with ASD but what i do find is when times are bad they seem really bad like right now if i try to think of something bad that happened with ds a year ago i cant think of any all i can think of is the good times im sure in a couple of weeks things will start to turn around and you will forget this and also ds is really cranky at the moment im putting it down to loss of routine and the heat im sure when we have some cooler weather things will start to settle down, and keep posting we are all ears on here

hermykne · 27/07/2006 19:30

oh dee, ihave no epserience of this but my heart goes out to you, are there any groups locally you could join just for coffee and chat.
dee oyu have prob done lots of things right, it must be v hard for oyu to remember, sometimes negatives outweigh the positives but try to think of them and stick a note on the fridge to remind you! and her maybe??!!talk about the good days out or a movie or something, i'm sorry if thats naive for em to say just hth.

Original poster

Dee31 · 27/07/2006 19:33

Thankyou ,i have a hubby but i tend to be the main carer for my dd and the one who takes most of the brunt of anything she cares to dish out , the heat is a factor ,we have been through this before unfortunately it lasted over a year !

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redbull · 27/07/2006 19:35

does your dd have a way of communicating with you if she is non verbal?

mizmiz · 27/07/2006 19:37

Hi Dee
You sound like a lovely mother.
Sorry you are having such a togh time. It sounds hellish.

Have you been to see your doctor about something for your daughter's PMT???
I have worked with quite a few young autistic women with raging PMT who were changed people after the correct intervention.

Have you support over the holidays?

Original poster

Dee31 · 27/07/2006 19:38

She uses Pecs at school but refuses to use them at home , she can say a few words ,and then its mainly pointing and screaming

OP posts:

apronstrings · 27/07/2006 19:38

the heat isn't good for anyone when it goes on like this. Do you have any friends in a similar situation? one thing I notice as the children get older is that the issues and how to deal with them gets harder. not in anyway the same but my dd1 has adhd and a sld - when she was younger and had a 'cute' factor other people found her easier than they do now I think. Also as theeir peers mature the differences bacome more apparent. is there an autism group that can support you and her , help you with expectations for the future?

Perigrine · 27/07/2006 19:39

Sorry you are having such a hard time {{hugs}}

mizmiz · 27/07/2006 19:40

Do school have the same problems with her?
If so,how do they deal with it?

Original poster

Dee31 · 27/07/2006 19:40

No support mizmiz we are seeing her consultant after the six weeks thinking about the depo injection altough if you know of something better im open to all advice x

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FioFio · 27/07/2006 19:41

This reply has been deleted

Message withdrawn

Original poster

Dee31 · 27/07/2006 19:41

they are starting to have the same problems as us and are walking on egg shells too mizmiz and they are going to see how she goes back to school after the six weks

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Original poster

Dee31 · 27/07/2006 19:42

i have to go dd wants the computer ill be though !

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redbull · 27/07/2006 19:44

was going to suggest PECS, ds still uses it at home as his speach is v difficult to understand

mizmiz · 27/07/2006 19:49

Dee,well it does at least sound as if you are communicating with school so that is good.
(You'd be amazed how many families I work with where essential info is not shared)

It might be worth starting a thread specifically re the PMT bit??
I have no personal experience but have seen young ladies much improved by even simple stuff like Evening Primrose.

You have a social worker i presume?
Remember,their job is to support you!
Have you rung him/her up?
Don't suffer in silence.There are no medals for that sort of thing.
Demand the support you need.

coppertop · 27/07/2006 19:59

Sorry you're having such a tough time, Dee. Never apologise for having a moan or a rant on here. xx

Davros · 27/07/2006 20:01

Hi Dee, my DS is going to be 11 in just over a week. He has severe ASD with Challenging Behaviour and Learning Disability and he is non-verbal. I agree with checking out interventions for the PMT. The biggest help to us, apart from using behaviour methods with PECs/Makaton, has been medication (Risperidone). It has been a godsend and has reduced his anxiety, he is still the same person but less difficult (although still plenty difficult sometimes). If you don't have a Social Worker then you MUST ask for an assessment, Soc Svs have also been a godsend and we access lots of weekend/holiday schemes, get reasonable respite and direct payments to help with someone coming to us at home. It doesn't happen over night but there may be lots of help they can offer. I hestiate to say this, but you must also learn to be honest about things with the Professionals. Its easy to say "fine" when people ask how things are but you must stop doing this with Professionals.... it takes practice! Its not disloyal and I'm not saying to exaggerate the situation to get support, just being honest should be quite enough. The difficulty can be that our children have ups and downs and during an up you forget so quickly what the downs are like. We can have weeks of good behaviour and then it takes 5 mins of screaming/hitting/SIB for me to completely fall apart.
Please don't feel you are moaning or talking drivel, as someone said this is what MN is for. DO let us know how things are going. You can always use your first post as the basis for what you need to tell Soc Svs, GP, CAMHS etc.

Original poster

Dee31 · 27/07/2006 20:22

Hi there thankyou all for your replies we dont have a social worker we dont get any out side help at all ,we have tried Respiridal but it gave her night terrors and also increased her violent episodes ,we have also tried prozac it had no effect, i have tried fish oils but any sort of vitamin and dd is doing the wall of death she becomes very hyper ,i have no friends at all my life is my dd i dont go out ,there are no support groups in my area ,the respite dd wouldnt cope with and as far as i can gather they dont do things like playschemes for kids as severe as my dd but i will think about getting a social worker but after working with social workers in the past i am very sceptical
thankyou all for your kind words

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