I can't cope anymore - I don't know what to do

[ShittyMum]

Have namechanged.

DS is 4, due to start school in September. He has been diagnosed with a severe learning disorder. He has delayed speech, social and communication problems, and behavioural problems. We managed to get him into a special needs nursery last September, and he has improved since then.

I just can't cope with him any more. I have my own problems at the moment - a prolapsed disc in my back which has been there since last October, gallstones (and increasing gallbladder infections) since September, and I've just come out of hospital after being diagnosed with gastroenteritis. DD was born last July and I've had (and continue to have) PND. I haven't worked since my back broke and DP has had to take over basically all childcare as well as look after me. I can't walk very far, am in pain constantly and need help with getting dressed, showering etc.

DS is extremely hard to be around. He's a bouncy 4 year old with seemingly endless energy that I just can't handle. He can't communicate his needs so a lot of guesswork is involved which results in frustration on both sides. He has a lot of meltdowns which come with no prompting, he will scream if told no, and has no concept of the future. He had a 2 hour long meltdown this morning because it wasn't "bus time" until 12. He refused all activites we offered (painting, drawing, lego, cbeebies, stories, anything) and only stopped when it was actually time to get the bus to nursery.

I feel like the world's worst mother because I can't cope with this anymore. I can't deal with not communicating with him. He screams and I just want to scream back. Sometimes it feels like he's deliberately trying to wind us up. DP is a fantastic father but we all have limits and these last few months have stretched us both so much that I feel like we'll both break.

I am actually looking forward to going into hospital to have my gallbladder removed because I can spend some time away from DS. That's the worst thing I've ever said.

Sometimes, I don't even like him. I question everything I do with him and I blame myself that he's like this. I hate it.

Thanks for reading - just needed to vent I guess. I know there's no answers to this and there's nothing I can do.

You are having a rough time.

'He can't communicate his needs'

This is the most important aspect because he is like he is because of it, namely a very frustrated little boy. Have you had help in teaching him how to make his needs known and how to understand the concept of time?

have you or dh had a carer's assessment? is ds in receipt of dla? does he have a sw that you can approach wrt getting some direct payments or respite? (tricky with one child and 2 parents, but with your own med concerns might work)

have you thought about home start? need to be quick as ds is 4 - any other younger siblings? the volunteers do help to take the pressure off if you are struggling.

have you contacted any local carer's prganisations? they tend to focus on people looking after elderly relatives, but there are some good and more inclusive ones out there.

there's lots you can do. but sometimes we all need to take a step back and take some time out. impossible to maintain that level of intense positivity forever. so, it's ok to roll over and recharge.

what methods are you using to communicate? what have you tried? what do they use at nursery?

be kind to yourself, and ask for help. from everyone.

and if you feel the need to discuss what you are going through with your gp, with the possibility of discussing some counselling or anti-d's, that's ok too. not an expression of failure, just exploring ways that you feel more able to cope. x

we're all human, and life can be a bitch sometimes.

We've tried different methods with him. He has his own little clock so we can show him when certain times are, eg 5:30 is "dinner time". However if that isn't right now, then we'll just get screaming. I made him pasta for dinner which took 10 minutes, he watched me prepare it, I told him it needed to simmer and he screamed until I dished it up.

He knows the phrase "Can I have..." and uses it for food and drink. He often just says things like "Daddy kitchen" and will point. It's the invisible needs that are the hardest, for example if he's bored, or if he wants to do something in particular but doesn't know how to say it.

I've just sat tonight crying because tomorrow will be exactly the same.

Childrens centres have access to additonal funding to help families like yours!

I know you feel grotty but in your shoes I'd be asking the LEA/SS if they could fund a full time nursery place for your child for a few months. Ill yourself and with a newborn you are fighting a losing battle. A few extra DS free hours would probably make ALL the difference.

Also by asking for extra help/nursery hours now you are flagging up to the ptb that he may need a ta or extra support when he starts school too.

Yes, but have you had specific support from an s/lt or a teacher for example?

i missed the newborn. get thee on the phone to homestart whilst you get the other things moving. (the ft nursery idea is a grand one - ds got a ft place because of his sister's needs, so it's reasonably common.)

To be honest I don't know exactly how everything works.

He's being statemented, his teacher did the bulk of that. He has an educational psychologist that came from the council and did an assessment here at home. Apparently she is due to do another one with him at nursery. The nursery have speech and language therapists on site and he gets one to one time with them every week or two weeks. They had done two assessments on him between September and January.

He doesn't get DLA, I haven't tried to apply for it. I don't even know who diagnosed him or if the diagnosis is an official one. We had a meeting with the nursery who basically spelt out his problems (which we knew anyway) and talked about what techniques they're using with him. They asked a lot of questions about his life at home, but it does appear that he's much more settled at nursery than he is at home with us :(

I don't know how to ask for help. Where do I go? Who do I talk to? What can I say? It's taken me months to be able to just write this on here - the thought of actually saying the words, "I can't cope" out loud terrifies me. What if they take him away?

I don't have any of the answers to the questions but just want to say I think you're doing an amazing job and are an amazing mum. Keep asking on here because the parents on this board can really help you and have more knowledge, common sense and empathy than any professional.

So sorry to hear what a tough time you are having and to add to excellent advice on here already have you talked to your health visitor (sorry my dc are both a little older so am a bit blurry as to what age HVs cover up to but I think its 5 years?). She could point you in the right direction of services and should hopefully refer you onto the right services.

It sounds like you need some time out so nursery place sounds like a good idea. Maybe once thats in place you can then start thinking about DLA, carers centres for support etc.

I was in a similar place to you a few years ago and found it hard to say 'I can't cope' but it is ok to say it and keep on saying it until things get better [hugs]

okey doke. they aren't going to take him away. but you do need some help.

you need to ask the nursery if they have a parent liaison worker - some sn places do. if they do, make an appointment and go through everything you have said here - ask which avenue they would recommend, and if it would be possible for him to have a ft placement until the summer - if so, do they need the referral from the paed to recommend this?

make a meeting with the head of the nursery and ask if it is possible for you to sit down and go through current targets with the relevant therapists. does ds get all of his slt etc in nursery? or does he see an external speech therapist in addition? ask for copies of all reports. and ask for copies of any individual education plans (at 4 you should be involved in target setting, and this should be re-done every term).

contact your health visitor. ask if there is an sn health visitor that can talk you through possibilities. some areas have sn health visitors that will help you complete the dla application forms (ours actually did dd2's first application for me). i beleive the cab will also help to fill in the forms, but tbh it is better if you can see someone that knows about children's applications. there is lots of advice on the sn board. if you download the form and ask questions as you work through it, people can give you a hand. copy all of the reports you get hold of and include them with your application. it can be a bit overwhelming, so you might want to get some local support in place before you try to complete it.

look up your local home start organisation and get a call into them asap. think about what would help you cope.

quite often a lot of areas have parent support groups - sometimes pan-disability, sometimes specific, so try to find out what is available locally. they are great at 'signposting' you to help. (or if you let us know rouhgly where you are, we might be able to get some basic contact details you can start with).

does ds have a paediatrician that he sees regularly? sometimes they just go once a year if the condition is stable?

it's absolutely normal that you are overwhelmed with an sn 4yo and a baby. abso-freaking-lutely.

and don't feel you need to do everything at once. walking into the nursery and crying in the office will be a really good start, if it's all you can manage. no-one can help if they don't know you need it.

be kind to yourself. hand over the baby to dh and have a bath. twenty minutes on your own, for yourself.

Just wanted to pull you up on one point - asking for some extra time at nuursery or the like is being responsible - you are poorly and have a newborn too!

If he's worn out by nursery he'll have less time to fret when you are in hospital too.

Frankly I'm suprised they haven't offered it to you already.

Noone will take him away from you! No more than if he was in nursery full time cos you were working.

A frank chat with your HV should get the ball rolling to get you some extra nursery hours, homestart and a help with the DLA forms. It's exactly what the health visting service was set up to do so ask her to pop round for a cuppa.

Thank you for all the advice. There's a whole other lot of RL stuff going on as well at the moment so I'm not online as much as I could be usually.

I will be getting in touch with everyone that you've all suggested. I didn't think that there was much help out there for families like us. So far, although the council were wonderful in helping us move DS to the nursery, we've really just been left to it.

I do want to stress that I love DS very, very much - I live for our cuddles and his "ove oo mummy" that I get sometimes - he's just such hard work. Both my family and DP's family live far away, and though DP's mother is fantastic, she can't be here as much as she or we would like.

When I posted it was the lowest I've been about our situation in a while. Thank you for all your support and guidance.

If your DH is caring for you and the DCs, what are you doing about money? I'm assuming he doesn't work.
Turn2us have a benefits calculator, as well as up to date information on any grants that might be out there for someone in your situation.
Cab will also advise on benefits, and they do have advisors who specialise in claims for children.

let us know how it goes (and change your blooming name!!!) - there are lots of us in similar positions. x

We're actually benefitted up to the hilt at the moment. (I realise that's not cool, judgey pants needed etc)

I'm recieving DLA for my back, income support, SSP (which runs out in April), housing benefit and council tax benefit, tax credits and child benefit. I've always been the one in charge of our finances and it was the one thing I felt I could do.

I'll be contacting people next week, I have DM visiting on Saturday, and my DSis is staying with us for support (hah!) while she has a termination.

On the bright side, I've just remembered we are due a one-night break in April as I bought DP tickets to see a comedian for Christmas, and his DM has agreed to watch the DC that night and the following day. So that's a bit of a bonus.

I'm so grateful I can let off steam here, thank you so so much x

You are not a shitty mum the fact is the shit has hit the fan. Accept all the help you are offered and the two of you look after each other. As madwoman said change your name and BTW you are not a benefit scrounger you are saving this bloody country thousands!! Take care. xx

check on carer's allowance, too. not sure where it fits in with the other stuff. dh might qualify on your behalf, let alone ds.

My heart's going out to you and sending you a virtual hug X.

Thank goodness there are people like you who admit, "I need help". I only wish my friend would do the same with her child who has aspergers. You are a brilliant example of someone who has shown their vulnerability. We are ALL vulnerable sometimes and the healing starts when we admit it and ask for help. GO GIRL! X

As 2old2beamum said, you are saving the country thousands; you are owed support!

If you are in herts area or nearby I am happy to meet you somewhere public, go though all the stuff, help with forms and sorting out stuff ect. It's a mind field