Talk

Advanced search

Here are some suggested organisations that offer expert advice on SN.

how do you all manage on a day to day basis - warning may be difficult reading and VERY long

(26 Posts)
silverfrog Wed 24-Jun-09 19:12:33

Sorry for very long rambling post, but have been having issues for a while.

I am struggling with dd1.

really struggling.

it has been a hard year for her - we moved house, so that she could attend a SN school, and so she lost a lot of her structure (toddler groups, preschool obviously, even church/local playground etc)

we haven't been able to go to any groups locally because of her behaviour since we moved - it was ok when she was having an off day before we moved, as the people there had known her since she was a baby, and knew she couldn't help it when she kicked off. But I haven't been able to face new groups, having to explain dd1's issues, and apologise for her behaviour when she inevitbaly had a tantrum and (accidentally) hurt one of the other children. so we are thrown together a lt more than we used to be.

when we moved we also lost our ABA tutor, and we have struggled to find any replacemnts, even though we are now actually in an easier area to find people, supposedly.

dd1 is not progessing at school - she really needs the one to one that ABA provides, and even the small class status of her SN school is not enough for her to cope. but she doesn't make a fuss about anyhting (not at school anyway) and so she is unlikely to recieve funding for a 1-to-1. and we cannot pursue an ABA placement as we can't find any tutors to help us get stuff on paper to prove her elarning is much increased using ABA. As an example of htis - she knew all her letters and numbers last year, but cannot remember them now, as nothing has been done this year to work on this (and won't co-operate when I try to do anyhting with her, as dd2 gets involved so dd1 just walks away), as she doesn't respond at all at school and so they think the work is above her.

she won't let me help her - she never has. she is incredibly controlling of me, and my movements, and always has been. she is curently stuck in a wonderful rut of trying to provoke a reaction, by whatever means. so she will ignore me when I ask her to do something, then will scream for that activity to happen (eg she will run upstairs to her room when asked ot put shoes on to go out, and then if I settle down to read a story with dd2 (not making an issue of her ignoring me, just ignoring it back, iyswim) she will come back down and be in fits over me not putting her shoes on, even though she won't let me put her shoes on. if i try to put them on, she goes back to running upstairs giggling)

however calm and detached I am, she will push and push until she gets a reaction. when I was dropping her off at school today, she turned into a horribly behaved brat, lots of jumping around and shouting loudly/being disruptive then screamed in my ear for a few minutes, pinched me, tore my t-shirt, and finally bit me before I reacted (during all this I was being bright and breezy, ignoring the bad behaviour and talking about stuff with her and dd2, holding hands etc to stop pinching as best I could, stood up so she couldn't scream into my ear - all non-confrontational avoidance stuff)

she is controlling to the point of not going to bed at the moment - I need to stay with her (we are withdrawing from her room slowly but successfully) so she is glued to my side form 7.30am to about 10pm.

she will ask to do somehting nicely (eg puzzles) and then when I get them out, completely fail to do them (all ones she can do successfully, but not bored with). if I put them away again, she has a meltdown. if I try to do something else with dd2 she has a meltdown. but she won't take part in the activity she chose to do. she is 5 in August, and so will legally have to be in school, but still no Statement in place (how hard can it be to Statement her - we have been in the process since December 2007, and still no sight of a Statement)

so, she won't play with me, she won't play without me. she likes singing, but if we start off, I cannot get anyhitng else done - she is hysterical if I even pause to take a breath (used to be like this when she was a baby) so I have to limit that, as dd2 needs talking to, and there is always the phone/door to answer too.

I am just so tired of being screamed at, whatever I do.

and I am tired of being the only one trying to help her. dh is no use - always working, and whatever I suggest he just says "good idea" but doesn't actually put any of it into practice himself - "oh, it's good for her to have flexibility with different people"he says when doing exactly what I have asked him not to do. I give up. he cannot even give me a date when we can go and talk to her school about her non-progress. or a time when he can look around other schools (where she is is a pre-school, so will need to move soon). I can't go on my own, as he wants to be involved, but he won't give me a date.time when suitable for him hmm. he has just told me he will get his PA to send me some details. FFS, why can't he just do this one thing?!

I am feeling more and more often that I am not up to this job, and I don't know what to do about that. it really feels as though I am having to do all this on my own. actually I think doing it on my own would be easier because I wouldn't be permanently irritated with dh. I really feel like I should never have had children - am obviously not cut out to look after them adequately, and given the conversation I just had with dh, probably about to be single too.

If anyone has made it this far, thanks for reading, and sorry for the pathetic self-indulgent whinge.

Am off to keep dd1 company as she falls asleep, so won't be back unitl about 11pm.

5inthebed Wed 24-Jun-09 19:26:16

First things first. it is not a pathetic self-indulgent whinge. You are obviously at the end of your tether, and rightly so! Anybody would feel worn out having to deal with this on a day to day basis. Don't be so damn hard on yourself!

You're doing what you think is best for your DD1, as tiring as it is, and you do need a break with it all! My DH is exactly the same, I am ripping my hair out with this statementing lark, and he just glimpsed at it and said it looks fine hmm

As I am not the one working, I feel that most of the weight looking after DS2 is on my shoulders, and I suspect it is the same for you. Your DH needs to at least help you with one thing during the day just to ease the burdon. I expect DH to bath DS2 as I find it too upsetting, and I also expect him to change at least one nappy a day.

Small changes, nothing big to start with, as this might be too much for your DD, but they will help. Is there anything that your DH can help do with your DD that will help you?

daisy5678 Wed 24-Jun-09 19:26:34

Poor you. Don't feel bad for feeling this way; we all do at times.

I think the first practical thing to do is get the Statement sorted. If you've applied for statutory assessment, were you turned down or was it successful? If it was turned down, re-apply and appeal if it's rejected. If it was accepted, remind the LEA of their time limits - it is supposed to take no more than 6 months, by law.

Secondly, what support are you getting from HVs or any specialist autism people/ CAMHS? Most of it will only kick in when she starts school, but some might be available now.

Finally, do you have a social worker? Because you should be entitled to an assessment by a social worker if you ring SS and ask for an initial assessment from the disability team. You may get some access to respite and the children's disability team will certainly know what services are available in the area.

Sorry dh is being crap. Ostrich syndrome?

Hope this is helpful and you must rant on here if you need to...this place keeps me saner than RL because people here get it, whereas in RL you get blank looks or bland 'oh dear's...

5inthebed Wed 24-Jun-09 19:32:54

I nearly googled "Ostrich Syndrome" blush

I agree with your last line, this board has been a life saver for me!

nikos Wed 24-Jun-09 20:49:46

It is incredibly wearing to have her constantly testing you from morning to night. I don't know about you but I find evenings particularly difficult (as dh works away during the week) and you are not even getting a break in the evenings if she is staying up to 10.
Would a visual timetable at home help? Might stop her being contrary about activities. (we are doing puzzles now because it's on the timetable). Maybe even give her velcroed pictures so she can set it up each day herself and let her get the control that way.

Is she at school full time? If so, that might be causing the release of bad behaviour when she gets home.

Big hugs though. It is very wearing and NO-ONE would maintain patience when pushed like this. So don't for a minute question your parenting skills. You are quite clearly doing loads for both your dds.

mum2fred Wed 24-Jun-09 21:24:52

silverfrog, you sound like a wonderful mum. DD is one lucky little girl. You are doing the best that can be expected.

I dont have much advice to offer as I seem to be 2 years behind where you are. Other than to say I don't know how all these wonderful mums on here do it. I really don't. Day after day after day. I struggle a little in my situation, I have no idea how I ould cope n yours. It sounds like an absolute onslaught.

But my gut feeling is that this will pass. It's horriffic now, but hopefully you will settle more in the area, meet mums with similarly hard kids at teh SN school. You will find someone wonderful to be hte ABA tutor and things will get back on track. And DD will start to develop wonderfully again. I believe this. Its just a horrible rut. I know about seeling like nad island, of being isolated... once when my dh was away for a week on business a month after we moved to a new area (not htat long ago) the only conversation I had with an adult was at a post office about stamps, but... this passed, it is much easier now. I am very happy for the move.

Just keep at it, keep your head above water.

HOWEVER what I DO want to say is that you DH needs to pull his finger out. It is outrageous that you are expected to negotate with his PA. I dont allow that with mine. Put your foot down (after you remove it from is arse). Your DD needs love and attention NOW, not in 2 weeks... parenting doesnt work like that. YOU need love nad attention NOW, not in 2 weeks. A marriage doesnt work like that.

I say you call the person you can lean on and talk to and organise a movie/dinner night. Tell dh its in concrete and he can suck it. Seriously. You feel guilty when you do something like this with men who work so hard, BUT: you both made the decision that you would stay home and raise kids so he could work and kids. are. harder. End of dscussion.
(ive done the career thing. let me tell you there aint NOTHING worse than washing hte kitchen tiles, feeding the screaming children... only to know that tomorrow you will be doing hte exact. same. thing.)

Happy mum = happy babies. Simple.

(Plus the more he has to deal with those 2 kids on his own, the more he's going to appreciate what you do)

silverfrog Wed 24-Jun-09 23:09:05

thanks everyone.

dd1 is asleep now, and actually she was very good - dd2 fell asleep at least an hour before dd1 did, and dd1 was very quiet and just stayed on her bed nicely and didn't wake d2 up smile

5inthebed - dh can't do baths or nappies in th eweek at all, as he isn't here when the girls are awake. ever (bone of contention). he has agreed to come home early while the sleeping issues are ongoing, so that we can share the delight of being serenaded for hours by dd1 not sleeping, but he is currently on a business trip (arranged before the sleeping went ot pot), and is away all week, and next week too.

givemesleep: statementing is a complete farce. we did move counties in the middle, but we had been in the process for nearly a year before that happened. last LA fully aware they were breaking the law (we kept pointing it out to them) but that didn't change anyhitng. current LA seem to think that because we moved in the middle, they can ignore timelines. they have just announced they want to re-start the process and assess dd1 again. so back to the initial 6 week assessment period.

No support form professionals - dd1 was signed off in last county, and hasn't been signed back on where we are now. hv's don't want to know as she is school age )despite not being at school), and have never had a social worker either. am seriously wary abut contacting them the way I feel right now, as there are times when I just want to hand dd1 over completely.

dh is being spectacularly hopeless, but more through fear of losing his nice life than denial. we agreed that I would stay at home and look after children. all well and good, but the hard slog bit of that is supposed to be finite, isn't it? I'm not living the life we envisaged (you know, the one where everyhitng is rose-tinited), but his life hasn't changed at all, and boy do I resent him for that.

nikos: we do use a visual timetable, but she either gets stroppy because what she wants to do isbn't on the timetable, or she wants to do it in another order (hardly the crime of the century, but back to control issues). and whatever happens, she then won't engage in the task when we get it out. she literally starts on as soon as she sees me in the morning - wanting to know what is for lunch (whatever I say is wrong, and I can't ask her what she wants as she wants me to tell her what it is...) so form first thing she is being confrontational every day.

mum2fred: thanks. it is just a rut, but one that has been going on for nearly 8 months now. I don't have anyone in RL to moan at, as we just moved, so don't know anyone round here, and my best friend is off traveling the world (she has just rung me, though, bless her, so at least got a few bits off my chest). the only people I talk to are people in shops or a few quick hellos at the school gate. there isn't really time or space (ie dd1 won't permit it) for anyhting else.

Everything you say about marriage/children is true, but I am coming to the conclusion that dh doesn't see it that way. sad, but there you go. he does work incredibly hard, and does his best in his own way, but hasn't changed his outlook at all, and our lives are very different form the one we planned...

thanks again, it does help to let it all out.

sarah293 Thu 25-Jun-09 08:39:41

Message withdrawn

HairyMaclary Thu 25-Jun-09 08:39:45

Silverfrog, have emailed you on TTR

BriocheDoree Thu 25-Jun-09 08:41:32

Silverfrog, I've been struck in the past that your DD seems a lot like mine (although to be fair mine is easier, and she's at school. I think you're having a very hard time with your ATM).
I also have a DH who works very long hours, and bedtimes are a pain currently. DS is nearly two and has just moved to his bed, so I have sometimes an hour and a half of demands for toilet, water, nappy change, etc. from the pair of them until they both settle down.
However, DH and I have a compromise. He MUST help me with the kids in the morning (unless he has a rare early morning meeting). He must attempt to be home early at least one night per week. It makes a huge difference to them and he knows that the reason they play me up at night is because they want their Daddy to be there as well. Last Friday night we had a clash of priorities - signing up to DD's extremely popular pony club and school fête happened on the same night. DH had to come home at 4 p.m. to pick up DD and give her a snack, before taking her and DS back into school for the fête. I had to go queue up at pony club to get DD signed up for next year and then went to help out at the fête. I was running a stand, so DH had to take the kids home at the end and put them to bed.
I think he understands a bit better now!!
I would also second the idea of trying to get some time on your own / with a friend. Night off, shopping trip at the weekend...?

bubblagirl Thu 25-Jun-09 09:22:41

first thing i feel for you seriously ii do i remember this stage with ds it went on nearly a yr and i was at breaking point dp again works away or works long hours all care is down to me even when he is home luckily ds is out of that phase and easier for me now

i found tough love and and a lot of tantrums did it i felt cruel and at some moments thought is this really worth it but given a week he knew i meant it and started to become easier again structured time he wanted to change activity, wanted to move them round on the board , screamed wouldn't do activity at all so i used to say go then if you decide to come and play come back and see me

every time he walked in screaming i moved him back out again i sad when you want to play nicely come back and see me

took few minutes maybe an hr but he came back sat down and wanted to do the activity i used to make him say sorry then praise him and get on i put sand timer out so he knew when it was time for next activity if really good id get him to choose reward activity

we did this every day and was really really hard but along with choices you put shoes on or go out without any he would refuse we'd go out the door without shoes on he'd scream id open door now go put your shoes on he'd go put them on and come back id praise him loads

was really waring and i felt mean but he began to realise i meant it and choices seemed to work great after that do this or you wont have this if he didnt do it right you wont have this now he'd get upset go do it and i'd praise him and he could do other thing again

as for the rest no support i started to make sure when i knew dp would be home i went out used to feel so guilty but i did start going out for few hours and made me feel so refreshed to deal with things again as id had breathing space

behaviour we would have special treat any bad behaviour lost the treat for eg hitting me or shouting he lost that treat if he could say sorry he could earn it back

it didnt happen over night but after about a month i noticed he was responding much better still needed removing from room but not as much still has choices even to this day and his language has improved loads we still use visual chart as he is a visual learner so he can see his reward disappear and come back when earnt it back

if i lived closer id pop round and keep you company drag you out for drinks

bubblagirl Thu 25-Jun-09 09:28:04

it sounds weird but i do find ds responds better to demands than asking if i say can you he'll say no if i say go and do it off he trots i have to be careful how to word things

"do you want to go get your coat", "no" i cant then make him do it i gave him that choice he said he didnt want to,
go and get your coat if he then says no then i deal with it as i asked him directly

i sound like sgt but its what works he seems to perform better to demands than asking whether its more understandable as other way is a choice and he makes it the demand way has no choices just clear instruction

nikos Thu 25-Jun-09 10:21:13

Would you be willing to say what county you are in as one of us might be near and could offer support? My ds has been very confrontational in the past and it can be unbearable at times.

FioFio Thu 25-Jun-09 10:27:52

Message withdrawn

silverfrog Thu 25-Jun-09 10:29:37

thanks everyone, for even taking the time to read it.
the more I think about it, the more I am certain it is more of an issue with dh and lack of support than it is with dd1.

that's not to say she doesn't drive me mad at times (this morning being one of them) but it is the knowledge that whatever happens, it will be me sorting it out for evermore that is getting to me. I technically have someone to rely on and share this with, but in reality, it isn't happening that way.

there is no compromise - I have asked/told/cried/nagged for years now, and nothing is changing.

before we made our last move, I told dh I thuoght we needed to see Relate (or similar) to get our relationship back on track. he agreed, if I thought it was necessary, but 8 months on, has made no moves towards helping me sort it out. there's not a lot of point anymore, really, is there?

I got to the point last week where I told him that I thought we had no future (he was disagreeing with tthe way i was handling dd1's non-bedtime, but not offering any other solutions, just saying "I don't think this will work" and being negative about it all, as if by saying that, she would just go back to her old routine) and that is when he said he would be home (as much as possible) for bedtimes to help out. but it was very much a "until we get this sorted", so I am left feeling that it may well paper over the cracks, but only unitl the next crisis, so is there any point to continuing to feel so much resentment towards him?

dd1's behaviours are nothing new, really, and I usually manage to get through them ok. I do the ordering around thing too, bubbla, as it is much more effective. but dd1 is just in a phase of ignoring that. and like you, I then try getting on with whatever (eg leaving the house with no shoes on) to show her the consequences, and she has a meltdown and we put shoes on. but I wan tto be able to do something (anyhting) without it being a big performance each time.

and the killer is dd2 is now copying all the behaviour too. so I've got them both doing it. and if, by some miraculous chance it's not dd1 that starts it off, then dd2 does so dd1 copies her ( and I do rejoice in the copying thing form dd1, but it does mean that my life is more Groundhog Day than it has ever been!)

and i have yet to find a way to deal with dd1 control of me issues.

yesterday we came home form school on the bike (do this regularly for school pick up). as soon as dd1 had been handed over to me, she said "no bike" (she loves going on the bike). somehting I cannot answer, as she starts screaming (happy to ignore it, but it is so wearing doing that every day) and I can't tell her otherwise as the only option at that point is the bike. so she screams all the way down the road until we get to the bike, then gets in happily and sits down. hmm the deliberate confrontation is what gets to me. it's like she's stuck in a rut of shouting/screaming for the sake of it, not because she is objecting.

anyway, back to the control issues. the chain jumped loose on the bike when we were riding home (oh joy), so I had to stop to assess situation. dd1 instantly starts shouting because we have stopped, no matter what I say. if it had been dh riding at that point, same situation, she would not have shouted. why she will not let any variation of what she thinks should happen when itis me there, I do not know, and it is that which gets me down most of all. she rules so much abut my life, and doesn't do that for anyone else, and yet I am the one who has to deal with her 24/7 because dh isn't here.

sorry for yet another essay - better to get it all out than let it fester though, right?

wigglybeezer Thu 25-Jun-09 10:36:56

Someone on here recommended "Don't Shoot the Dog", a book by Karen Pryor (I think it was Peachy). I have found it really good as its methods for "training" children are very simple and i can cope with using them consistently even when I am a bit stressed or tired. DS3 (admittedly NT but in a cheeky, defiant stage ATM) has responded well, i was having a lot of trouble with him running away and being silly when i was trying to dress him, put shoes, get ready for bed etc. It's basically positive reinforcement, so you would have to have something that was a strong motivator for your DD that you could hand over straight away (like a sticker or a sweet etc.).
I hope you get help sorted out soon.

bubblagirl Thu 25-Jun-09 10:55:33

are you close to any of us? would be great we could all meet up

i don't get much support either but dp is quick to pick if he doesn't like what im doing then i lose it lol

ive told him too time and time again to help out more when he is home but he doesn't thats why i make sure i go out when i can so he has to do it and i get my peace

ive resigned myself to the fact that he'll probably never be as hands on as i would like but have started delegating certain things for him to do i do cooking i'll leave him the washing up

make him do more things but not too much considering he is working all day and he has taken to this well

bubblagirl Thu 25-Jun-09 10:56:12

sounds like im talking about a child but i do find as dp isnt home alot he actually doesnt know what to do again finds it easier to be told

5inthebed Thu 25-Jun-09 11:06:12

Silverfrog, my DS1 often starts acting like DS2, which sets DS2 off. Very annoying at times isn't it!

I know what you mean with the controlling. DS2 thinks he owns me, and at times it is very overbearing. It is quite hard as well when trying to feed ds3 (7 month old) and all ds2 wants to do is sit on me.

Could you perhaps show your DH this post? It might shock him into realising just how he is acting and how hard he is making it for you.

You are not alone in this. I have told my DH a few times lately that he would probably be more hands on if we didn't live together, and I do think it is true.

I do think you need a break from it. Take some you time. Where in the UK do you live?

mum2fred Thu 25-Jun-09 11:23:08

i think you do need to get a few hours a week to yourself, taking the time away from the family. Even if it is on the weekend and only a few hours window-shopping or a coffee with a book. You need to do this so you don't burn out. And hte more time dh has with the 2 of them on his own the better.

i agree that it is important for you and dh to be on hte same page and to look after one another. if you have that happening, then i suspect you have the strength to deal with the wildest of tantrums, the strength to be able to implement the right amount of toughness you need to. You need to be able to call dh at any point during the day and tell him that you are struggling and get empathy and positivity back. If he's a smart man he should realise that in order for your chldren to be happy (and for he himself to be happy) he needs to work at making you happy.

It sounds like there is no getting through to him though. it sounds like youhave tried everything. Perhaps he needs a shock to the system. Might I suggest a WHOLE weekend away? Go visit family or a good friend. Let him deal with them hte hole weekend and as he dreams of hs oasis that is work, maybeTHEN maybe he will realise how effing hard it is what you do and that you need help - not just a lip serice.

i really feel for you because i definately have times when i feel like an island, that this burden of early intervention and trying to get our kids ready for the world sits firmly on our shoulders alone. It will get better, it really will.

BTW....If dh ever disagrees with a method I try, i tell him to bugger off and that we wwill talk about it later (ie. not is the midst of my frayed nerves!). THen hen we discuss later I will ask what solutions he has... which is normally none (as i am hte one doing all hte reading/research)! I explain to him why I am trying such-and-such and that if it doesn't work I will be happy to try any suggestions he has. That normally shuts him up. And then my method ends up working and i add it to the tally grin

sphil Thu 25-Jun-09 11:37:49

Oh Silverfrog - only just seen this. Can't add anything to the words of wisdom from other posters (and your own, because I can't see how you could be handling DD1 any differently tbh). But just want you to know that I'm thinking of you. And two things - firstly I know I absolutely could not manage if DH wasn't as supportive and sharing as he is. I occasionally get the 'oh, that's a good idea' response, while he's staring glassy-eyed at the TV and it drives me bonkers, so I can see how desperate you must be feeling. Secondly, we've been here two years now, and I am only just starting to feel like part of the community. Sorry, I know neither of those comments is particularly reassuring!hmm Oh, and we moved in the middle of the statementing process too, and it took two years until we got a final statement that everyone was happy with - again, not v comforting I know, but more evidence that we are CLONES grin

cyberseraphim Thu 25-Jun-09 11:54:09

Nothing much to add - but only that from my personal experience seeing your child fail to progress in nursery/school is extremely stressful as it makes you doubt your own judgement/sanity when you think you see potential at home. When you have the opposite as I have had from both Nhs hospital therapy and my VB tutor (raising our expectations) you feel like you have won the lottery. This is probably a mad idea but my tutor does visit families in England (we are in Scotland) as part of her consultancy. If where you live ever co incided with a visit down there maybe she could advise on how to kick start a program.

Frasersmum123 Thu 25-Jun-09 12:38:16

I dont have any advice but just wanted to send some positive thoughts and hugs.

I agree that you need some time to yourself. I need to take my own advice but it will make you feel alot better for the break.

Also if its any help, my DH is exactly the same - he sees DS's problems as something I have to deal with etc, and rarely gets involved in the care/dr's visits etc. Would it work if you issued an ultimatum? - Either he gives you a date or your doing it?

I hope today has been a bit better for you

MarmadukeScarlet Thu 25-Jun-09 17:18:45

I'm just cooking for my two, so will be back later. Not that I have any words of widom (or a finalised statement!) x

silverfrog Thu 25-Jun-09 17:55:22

will have a look for that book, thanks wiggly.

dd1 has been a LOT better today (she always knows when I've reached the end of my tether!) - she has still had her moments - like digging up the flower bed and sprinkling soil around, then lying in the freshly dug bit grin (she managed this while I was putting the bin out - literally form one side of the gate to the other! still, she used nice appropriate langugae while she was doing it, and it's bound to be good for her immune system hmm

dh is back tonight - i thought it was tomorrow, so that's a bonus as he'll do the waiting while she goes to sleep shift tonight. but we do need to have a serious talk about how things go on from here. we need to work out how to move on from here, and how I'm going to get breaks from the girls (ironically, one of my Christmas presents from dh was a break at a posh spa - but has he let me know which dates he can take off work and look after the dds?)

cyber - thanks, but I have a consultant, it's tutors I need. I would do it myself, but there is no way dd1 would let me, and tbh it would just be setting us up for more conflict.

sphil - blimey, not only do we have spookily similar children, but now our lives are parallel too! grin

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now