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Original poster

At my whits end with disabled son

34 replies

idontknowmynamee · 07/06/2022 06:33

That's simply it

I get no help and he's really worn me down

He's so strong and I'm struggling to control him.

For instance, he doesn't sleep well so usually sleeps in bed with me and last night he's bear hugged my head soooo tight and then dug his knees into my back an I couldn't get him off. He really hurt me and Thwir was nothing I could do as I couldn't get him off? But if I don't co sleep I get no sleep?
He is very mobile but his mobility isn't great and he can't see very well so he's forever pulling me over and grabbing things / people am breaking things etc. he hits me an bites me an screams at me, totally get his distraction !

Some days he's the most angelic little boy an I love him so so much I just don't know what to do anymore. Family won't help because of how hard he is, they've openly admitted it
Iv tried for resbite an no one really takes me on and I think it's purely because I'm young and they think I manage fine when I'm just broke, they offered me a carers thing where someone I appoint will care for him 4 hours a week an they will pay but no one would agree plus 4 hours ??? I'm struggling so much some days I want to run away an never come back. I hate leaving the door at the moment it's become so difficult and cruel for us both. this really isn't his fault it's part of what's wrong but what do I do? No one understands no one I know has to deal with anything like I do.
I'm just a tierd, worn out mum today with a stiff bloody neck ! Sad

OP posts:
Attwoodsladyfriend · 07/06/2022 06:38

that Sounds very tough OP. I’m so sorry you’re going through this.

How old is he? Does he go to school, and have an EHCP? Has he got his own social worker? And have you had a carers assessment in your own right? I ask because I think they might be the key to additional practical support, and sorting out why on Earth anyone might think 4 hours a week respite, even if you could find someone to help, would do it.

KangarooKenny · 07/06/2022 06:40

How old is he ?
Have you ever told the GP about the sleeping situation, and have you been offered Melatonin ?

Morph22010 · 07/06/2022 06:43

It’s really hard to get respite, in my area people are generally given about 1 or 2 hours a week, it’s pitiful so 4 hours is actually quite high by comparison (although I agree it’s not enough). If your area is like mine though You can save up the hours you don’t have to use 4 each week so 8 hours every two weeks would possibly be better? Is he in special school? If so could you approach to see if any of the ta’s he knows would be interested.

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Original poster
idontknowmynamee · 07/06/2022 07:12

He's 6, we have melatonin and it gets him to sleep but only lasts like 2 hours tops...
the care assessment I asked for an they rang an just said your fine ? I told the nurses about this an they said it was disgusting.

His dad said I should give him away if I am struggling so much an not get resbite ?? Doesn't help with shitty people around it really doesn't

It's only recently he's gone worse but it's happened so quick I havnt been able to digest it all, i do everything and I do it all on my own! I am pregnant and now his dad is wishing the baby's dies so it doesn't have a shit mum like me who can't cope. This isn't the case because I do cope im just struggling at the moment? He does literally nothing for him! Im broken literally I'm sat in the bathroom sobbing ....

OP posts:
Original poster
idontknowmynamee · 07/06/2022 07:12

He's 6, we have melatonin and it gets him to sleep but only lasts like 2 hours tops...
the care assessment I asked for an they rang an just said your fine ? I told the nurses about this an they said it was disgusting.

His dad said I should give him away if I am struggling so much an not get resbite ?? Doesn't help with shitty people around it really doesn't

It's only recently he's gone worse but it's happened so quick I havnt been able to digest it all, i do everything and I do it all on my own! I am pregnant and now his dad is wishing the baby's dies so it doesn't have a shit mum like me who can't cope. This isn't the case because I do cope im just struggling at the moment? He does literally nothing for him! Im broken literally I'm sat in the bathroom sobbing ....

OP posts:
mooshed · 07/06/2022 07:15

Oh love I'm so sorry, this sounds so hard. Pla ease contact SS again and request another care assessment. Tell them exactly what you've said here.

CloseYourEyesAndSee · 07/06/2022 07:15

I'm so sorry you're going through it. Pregnant by a shitty man with a disabled child is a lot.
have you spoken with any charities or parent peer support organisations in your area? It sounds like you need an advocate.

Geneticsbunny · 07/06/2022 07:46

Go back to social services. They can offer you weekend and school holiday respite at a respite club and overnight respite. Although it might take a while to actually get them. Tell them that you can't cope and are thinking about leaving him. Mention family break down and say that you are at crisis point and need help and that the situation is dangerous.

ADHDgirls · 07/06/2022 07:51

Geneticsbunny · 07/06/2022 07:46

Go back to social services. They can offer you weekend and school holiday respite at a respite club and overnight respite. Although it might take a while to actually get them. Tell them that you can't cope and are thinking about leaving him. Mention family break down and say that you are at crisis point and need help and that the situation is dangerous.

This.

Because when your new baby comes along things are going to get much much worse and if he’s violent, there is a huge risk to the baby, so you need the support of the social services disabled childrens team asap!

Doesn’t his dad help? What will happen when the new baby needs you but DS has you in a headlock in bed?

I really feel for you OP.

MolliciousIntent · 07/06/2022 08:08

This sounds like a dangerous situation to be bringing a baby into, I'd go back to the carer's assessment folk and make that clear.

toomuchlaundry · 07/06/2022 08:14

Is the dad to the baby dad to the older child too? Does he do anything to help apart from awful comments?

horseymum · 07/06/2022 08:16

I think once the baby is born you can get help from the charity homestart. Also push for the social work children with disabilities team ( if that's who your social worker is in) to get you overnight respite. We looked after a child one weekend a month. There are foster carers who do this. Or if he's really challenging it might be at a children's home once every few weeks, where the staff are experienced. Also some carer support for you, see if there is a local charity. You need to say how hard you are finding things, I hope you get some help.

Sswhinesthebest · 07/06/2022 08:34

That sounds really tough. It doesn’t help that your relationship sounds awful too. He should step up!

Sswhinesthebest · 07/06/2022 08:39

There are safe beds fir kids with problems. They are expensive but some charities help with the cost. Worth looking into. Or if family won’t help practically, will they contribute to the cost of one?

www.safespaces.co.uk

There are other sites too. Google them.

Sswhinesthebest · 07/06/2022 08:41

In fact there is a section on funding on that website.

SpaceRock · 07/06/2022 08:43

Sounds so difficult.

How far along are you? If early on have you considered your options? Really seems like you have a lot of your plate and a completely unsupportive father of your children.

I really feel for you :(

SleepingStandingUp · 07/06/2022 08:48

If you want less shitty people around, I'd suggest starting with his Dad. He sounds like a total shit. Are you actually together? Does he have him at all if not?

Have you told school how badly you're struggling right now?

cestlavielife · 07/06/2022 08:50

Find your local parent partnership
Talk to them about local offer sometimes there are local services run by charities
Which county are you in?
Tell your midwife everything
talk to your son school for advice they should have a home liaison person
Think about leaving your partner he is useless
Ask for the four hours thru agency you could take as a whole day per fortnight if works better

behindanothername · 07/06/2022 08:52

Which county are you in op?

Dalekjastninerels · 07/06/2022 09:02

If your son is only managing to sleep for 2 hours it will affect his mood and make his behaviour worse.

You definetly need respite ;lookinig after a child with an Intellectual Disabilty can be rewarding- but also very stressful and no one can do it alone.

Your childens' Dad sounds as much use as a Spare Prick at a Wedding. What use is he to you or your children? He sounds very unkind.

You are doing the best you can and you are a good Mum

Original poster
idontknowmynamee · 07/06/2022 09:25

The sleep does have a knock on effect most definitely!
But I also need to get shut of his dad.... that's a big issue aswel as my son and I think I feel worse as he does nothing. since been pregnant my DS has got worse and his dad has just took a huge step back? He goes out once every weekend an doesn't come home until daft o'clock- stays in bed the whole day the next then goes for tea once a night with friends. I don't get to do any of this.
I Don't know if he's done this knowing I am totally F**ed in my situation now?? Financially and physically
He wanted the baby not me originally but said he would support me and help. now he wishes it would die an does nothing ?
I can manage on my own I just need help and advice how to manage Ds better I think?

Ds absolutely adores baby's and seems to be so calm and gentle an strokes them etc so I am hoping he will be like this with his new sibling ? I love the bones of my boy I just feel like I'm failing him as a mum

OP posts:
Hedonism · 07/06/2022 09:36

Geneticsbunny · 07/06/2022 07:46

Go back to social services. They can offer you weekend and school holiday respite at a respite club and overnight respite. Although it might take a while to actually get them. Tell them that you can't cope and are thinking about leaving him. Mention family break down and say that you are at crisis point and need help and that the situation is dangerous.

This is good advice.

SafferUpNorth · 07/06/2022 09:41

This sounds sooooo tough, OP. You have been dealt a difficult hand but please believe - you are not failing your son!! You've said how much you adore him, and it's clear you're wanting the best for him. But you need to take action to make sure that both of you and the new baby have the very best support. Suggest:

  • Get rid of the useless father of your children, he sounds like nothing but a drain and he's grinding down your self-confidence. You need to be strong for your kids and having him in your life has the opposite effect
  • Confide in family and friends. Let them help you.
  • Get all the practical support already mentioned above. Stick your neck out and ask. Also charities. Get family member/friend to help you track down everyting that's available.
Good luck OP. Flowers
Emelene · 07/06/2022 09:48

How is your mental health OP? This sounds like such a difficult place to be and you sound like a lovely mum.

If you’re pregnant and with mental health difficulties there is a lot of support you could get from perinatal mental health services (GP can refer even for an assessment). But I appreciate it may just be a case of desperately needing some respite care. All the best to you and your family. Flowers

Dalekjastninerels · 07/06/2022 09:50

Yes his Dad needs to go- he is no help and is saying the mosr awful things about the children born and unborn.

I am certain you will manage and do well, but perhaps respite on a regular basis like the first weekend of every month - also be consistent so your son gets into the routine of it and accepts it as such would be useful, this may be very dificult to get- although it shouldn't be.

Sleep deprivation definetly affects children (and adults) with ID badly- so I hope this improves for your son.

You have not failed at all

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