Depressed DH and disabled DC

[HickheadDamster]

We have 2 DD, 9 and 6. Both have complex SN. Eldest has been out of school since Easter (waiting for tribunal) so is always at home. DH works from home in his own business. After a lean first half of the year which caused a lot of stress things have picked up so much that he's working non-stop. Obviously great that business is booming but a different stress nonetheless.

We have limited help with DDs as grandparents are elderly. Have been trying to find a support worker for youngest for most of this year but haven't been successful and therefore she has 2 hours with a PA after school once a week but this is all. Eldest refuses to leave the house.

Like a lot of SN parents we dont get time to make regular meals, watch TV or even bathe as regularly as we'd like. Its really really tough.

DH has been struggling for a long time. Lately its been worse. Last night he actually was saying he can now understand why people commit suicide and that he just wishes his pointless existence was over. Over the past year Ive suggested seeing the GP, referring himself to talking therapy, trying antidepressants... he rejects all of these, saying none of those things will change the situation of our shit lives which is the reason he feels like he does. I kind of agree with him tbh.

However, this situation cant continue indefinitely. All the care of our youngest falls to me as he just gets so overwhelmed by the constant noises (whinging and high pitched screaming for example) and constant supervision needed that even though im doing all the care (or at least a good 90% of it) he is still constantly grumpy and moaning about the noise (amongst other things). He does more with Eldest DD but will quite often tell her to go away as he's trying to rest or is snappy with her which then triggers meltdowns with her and im then trying to split myself to try and keep everyone happy.

Today I took youngest DD out by myself and was out for 6 hours. I was really anxious about managing on my own but knew we'd all be miserable stuck at home as DH was too miserable to go anywhere. I've come back, DD is crying because she's wet and needs changing and he immediately asks why I've brought her back when she's so miserable and that he's not dealing with her as he feels like he's having a heart attack.

I cant carry on like this but I dont know how to change it. I was a nurse until the youngest was unable to go to nursery as her SN became apparent around the time I was due back after maternity leave. And with eldest DD out of school its not been an option since either. I feel totally trapped and clearly so does DH.

I hear you but don't have any wise words. Like you, I have been looking for a PA for about 18 months and nada, nil, zilch. Someone will be along soon to tell you to ask SS for some respite without realising it is like looking for unicorn poo. I am on my own so don't have to carry the weight of another adult, I cannot begin to imagine how hard that must be. He's right in a way I guess but you don't know if anything will help until you try, just dismissing it out of hand is not on, I think there is merit in talking to others because a problem shared can be a problem halved. Some of my greatest support comes from talking whinging to others who are going through it too and really understand what it's like.

@Seawolves thank you for yoir message
I'm sorry that you understand the situation.it is tough, no doubt. I think if we only had one dd we'd likely split, but honestly not sure how id cope with both on my own full time - DH certainly wouldnt be taking the youngest for any length of time.

As for social services, we already have paid hours for a PA - but we cant find one! People seem to think they're easy to find - its a tough job for minimum wage tbf!

Oh man that sounds so so tough. Does your youngest go to school? Which is toughest to look after?
is there any activities they like doing like forest school or swimming etc they can blow off some steam?
You didn’t ask for this life yet you are trying your best. Your husband needs to be doing that too. Can he have me-time at the gym to get his self care in order so he can be more present and supportive at home?

of course you need to come home if your daughter is wet, if he can’t cope with the noise he needs to go out. To the cinema, to a mates house, to a hobby (men in sheds?)

Thanks @Tammygirl12. They are both challenging to look after but youngest is overall hardest as she is developmentally only 1-2 and non verbal. She enjoys swimming, which is where I took her today, but outdoor activities are tough as she has sensory processing disorder and struggles with clothing, so outdoor stuff is hard when its cold and wet and she wont wear a coat or hat etc.

DH is so depressed he's got no interest in anything. He's piled weight kn over the last few months and is depressed about this too but doesn't have the energy/doesn't feel well enough to go to the gym 😢. He's stopped socialising with his friends as he's got nothing in common with them - we dont have hobbies, go out or go on holidays so little to no common ground anymore

My friend has been looking for a good PA for years, she has one but they are super unreliable and hardly ever actually come. They are a TA at her son’s school.

My DM worked in a disabled children’s respite council home in the 70s/80s I don’t suppose they have them anymore.

Is there a befriending service that might be able to act as a temporary help whilst you get support. Can you get your care plan reviewed to see if you can use an agency? Also is there some thing called shared lives where you are? It’s like temporary foster parents.

@Noras we are authorised to use agency but they are either not suitable or dont get back to me. Where we are Shared Lives is for older children/young adults. Have asked in the past about foster care but this was refused. It would also only be suitable for youngest dd so we'd still have eldest.

Just supporting your post as a SEN mum who's had PA hours authorised for 2 yrs and had no takers at all.

Could he look into a local man's shed type of place? They keep popping up all over the place these days, they advertise on FB mostly ime.

I've never heard of men in sheds! Will have a look but honestly wouldnt be surprised if DH would refuse to go. Being a sen parent is so isolating 😢

You can't help someone who won't help themselves OP. I think I'd be asking him to leave for a bit. Yes it'll be hard but I think a major source of stress out of the house might bring a calmer household.

I know we're supposed to be supporting our partners through their dark days, but being a SEN mother there's just isn't enough in your cup for that.

If DH is struggling with noise, has he tried noise cancelling headphones/earphones? I have Bose noise cancelling headphones that help me cope with noise. Lots of other people use Loops.

Have you requested an expedited hearing for DC1’s Tribunal on the basis she is out of school?

Is the LA providing alternative provision? Whilst waiting for the tribunal hearing, the LA is still responsible for anything detailed, specified and quantified in F of the EHCP. If she is unable to attend the placement in the EHCP, the LA is also still responsible for ensuring she still receives a suitable full-time education. Unfortunately, most of the time LAs only do this when forced, so you may have to go down the pre-action letter route.

Go back to children’s services. Yes, there is a crisis in care, but they can do more than shrug their shoulders and say there is nothing they can do. For example, they can increase funding so you can increase the wage to attract people &/or they can fund 2:1, which is often a more attractive role. Although it isn't easy and they won’t do these unless forced, I’m afraid because it saves them money. Some people have agreement to use fewer hours than originally allocated but at a higher rate.