I just don’t want to do this anymore

[Reepicheepy]

I know this will probably sound awful but I need to say this somewhere and I hope at least someone might understand.

I have two DC, eldest is 11 and diagnosed with ADHD/anxiety/OCD and ODD. Strongly suspect he is actually PDA.

He has always been very challenging and physically violent to me ( and occasionally his sibling). Recently this has at least changed more to be very verbally aggressive/cruel to me.

My ex had an affair when DC was 5, and now has another child with his partner. Before that he was away long amounts of time. My DC had a very difficult relationship with ex’s new partner. As a result for years I facilitated ex having pretty open access to the house so he could still see and maintain a relationship with DC.

Because of DC although I work full time I have lost my career as he couldn’t access after school childcare so I have to work around that. As a result I am struggling to afford anywhere to live near enough to the schools. School were not supportive and I ended up spending all my savings on getting him and EHCP and then fighting the school for support then fighting for an appropriate secondary. As he can’t have babysitters etc I haven’t been able to rebuild a life for myself at all. I have no family support. I had three major operations this year which I have had to manage largely alone.

I’ve always been a sociable person and I find the loneliness unbearable. I do have a few friends but obviously all have their own families/lives. Sometimes I lie in bed and wish I could just walk out the house. I hate that this is my life and the person I’ve become. I cannot see a better future. I cannot find acceptance.

DC has been away with their dad and currently refusing to come back to go away with me. The logical part of me knows this is partly anxiety but he is so cruel - going on about how much better his holidays with his dad are ( dad obvs has more money than me although I have to manage DC ringing me crying from these holidays frequently), sending me photos of the big garden they have, going on about how much nicer it is there and also photos of his younger sibling ( he is very perceptive and he knows this is something I struggle with as one line I have is I don’t want his younger sibling in my house).

Today I just feel like I don’t want to do this any more. I don’t think I have the caring capacity of other people, I’m too selfish and I don’t want to sacrifice my life any longer. I don’t want to have to constantly have horrible things said to me ( sometimes it goes on for hours) and not respond. It feels almost like an abusive relationship. I’ve tried to stay positive for so long , tried to make the best of things but im honestly not sure I can do it any more. I just want a life for me as well.

It is exhausting and never-ending, and so much harder without support.

Does DS’s EHCP contain all the provision he needs, including therapies? It sounds like you need an early review.

Have you had a home OT assessment to look at making the house safer and better meet DS’s needs?

Financially, are you claiming everything you are entitled to? Have you applied for any grants you are may be eligible for?

If you haven’t already had social care assessments (a carer’s assessment for you and an assessment by the children with disabilities team for DS) request them, Contact have model letters you can use. If you have already had assessments, you need a review as you need more support.

Thanks for replying.

You are right I need to apply for DLA - it’s been on my list for ages.

We were assessed by social care during the initial EHCP but found to have no needs. They refused to reassess in latest review. I should have been more on this but I was focussed on getting his secondary and maintaining the school support. I think this part of the problem tbh I’ve always just had all my focus on his needs at school as it was making everything else just horrific - I need to reset and reconsider. I did try reaching out to various charities ( my friend has had a lot of support) but in my council area they are all restricted to those with ASD and they refused to assist without an ASD diagnosis.

He doesn’t have all the therapies he needs tbh. I’m hoping his new specialist school will help with this. Also he finally got the OT support in school from the LA (17 months late and after I had to threaten JR several times) and the OT was so concerned she referred him to CAMHS ( although given how they are at the moment I’m not hopeful!).

I guess I need to re energise to fight for all these again.

DLA will really help financially and take the pressure off you. If DS gets DLA and you get UC, you will get at least one extra element, maybe 2 depending on the rate. And, if you don’t currently get UC, you may find you are eligible if DS gets DLA.

Request social care assessments using Contact’s letters. Complain if you are refused an assessment - Contact also has a model letter for this. Then, if complaining doesn’t work, you can request an independent review panel review the case and then complain to the LGO. Depending on specifics, JR may be possible too. If you appeal DS’s EHCP at any point, you can request social care is also looked at.

Improving the EHCP is likely to help, as well as OT, look at SALT and MH therapies.

Does DS have his own bedroom? Or does he share?

I would not qualify for UC. I am lucky that my pay actually isn’t that bad, it’s just I’m in London and commutable areas around his new school are also expensive.

He does currently have his own room - this is one of my current concerns as due to divorce we are selling but I will massively struggle to get 3 beds. I guess the option is I sleep in the living room as there is no way o could ask my other DC to share.

He was assessed for OT and SALT. Had SALT provision in EHCP that was never delivered ( either by school or LA), SALT did go in for annual review (30 mins with him) and then discharged him from SALT. I’ve spent the last month or so fighting to challenge this - ended up the SALT provision is now back in ( I did have a private assessment but it is over a year old now) as responsibility of the school but he remains discharged from the service. Luckily his school is a small private specialist and had factored SALT into their annual costs for him so he will at least get it this year.

This actually seems to be the LAs current approach - use annual reviews to remove provision. It’s exhausting.

Thanks for the advice re social care - I will get onto this. Part of the problem is my job is very intense and means working very late ( as they allow me flexibility for school drop off and pick ups) and then trying to facilitate my youngest doing at least some activities etc I’m just exhausted ( particularly at the moment as I’m still recovering from my last op).

I think I could cope with all the above if DS wasn’t just so cruel and unkind to me. I know he’s a child but he can read people and work out exactly what to say to be most hurtful. It’s hard to see any positives ( which is a problem in itself because he no doubt picks up on my feeling like that which drives the whole cycle)

Once you have moved, if your new home needs adapting to meet DS’s needs, you could look at a DFG.

If you are doing the school runs, are you receiving mileage?

If provision is detailed, specified and quantified in F, it is the LA with ultimate responsibility rather than the school and can be enforced via JR. The right therapies and other support as part of the EHCP will help at home too.

Can he stay with his father for a little while longer? And you go on the holiday without him? Can you move to a 50:50 custody agreement with his Dad (if not already)?

Just these this is so hard.
Contact A Family and also CAB will help you to draft DLA forms.

Thank you for all the replies.

Unfortunately he cannot stay more with his dad. His dad lives with his partner and has a 3 year old with her. My DS doesn’t get on with his partner ( this of course is also part of the problem - my ex did not handle it all very well when he first left ( plus saw his g/f with my son there when he was having the affair) so there is a lot of resentment. And I guess also she doesn’t want his behaviour in their house either.

I feel in despair tonight. I fought and fought to get him into a small specialist school and he is already in trouble there and probably going on a behaviour plan - partly for being unkind to another child. I don’t even know where he will go if he gets expelled from there. I don’t understand him and feel so ashamed and as if I am constantly judged. I honestly don’t know where/what I did wrong and nothing I say to do makes a difference but ( understandably) I am held responsible for him.

I have however requested a social care assessment and started completing the DLA form so that is at least something!

It's really good that you have so much specific advice, however - just in the interest of balancing a list of tasks for you to do with sympathy:

It is incredibly hard, particularly the PDA profile. Just by living with it, you're being incredibly strong every day. My own DS is currently upstairs shouting at my partner because tbehre getting dressed. The little things stack up don't they.

I completely identify what you mean with the loneliness, and the school struggles sound so hard. Have some 💐from me too.

One can be sympathetic and provide practical advice to help the OP at the same time…

OP, you haven’t done done anything wrong. Is DS receiving MH support?

He has a CAMHS appointment end of month. It keeps getting cancelled and moved!

Is there any MH support in DS’s EHCP?