My life feels like it's over

[MinorDelay]

I am at an all time low, and don't know how to get myself back up. I'm sorry if this is long. There are many separate issues at play - so thank you for taking time to read - and I know some of what I say will open me up to judgement.

I have DS, age 4 - who has an autism diagnosis, he is non verbal and I wouldn't be surprised if he gets an ADHD diagnosis down the line - caring for him is a lot - he doesn't sleep before 11pm and is constantly on the move, has no sense of danger & hurts himself & others when distressed or frustrated.

He developed typically until he was about 20 months, then lost all language, and is a very different child now - I know I'm not allowed to say it, I love him so fiercely, but I really grieve my happy little boy and the character he was becoming. I can't bear to look at photos of him before, please don't judge me. I love him more than anything - I just can't reconcile the change in him. I blame myself daily - question all my choices through pregnancy and his early development. I torment myself and feel deep down I caused this somehow.

We have used all our savings to pay for various private therapy & support for him. We recently moved to the countryside to give him more space, it was definitely the right decision for him - but I feel so isolated. I am learning to drive, but my test isn't for months, and I hate having to rely on my husband at all times.

DS is in nursery 2 days per week, but the other days is at home with me & my DH - whilst we try and work. This is due to his nursery being unable to recruit a 1:1 (which he needs to keep him safe) - our local authority won't let us split the EHCP funding, so we can't send him to another place on the days he has off.

My work is really starting to suffer - my boss makes passive aggressive comments all the time & my confidence is shredded. I try and get up before DS at 5 - so I can start work & fulfil my hours. I desperately don't want to lose my job, as it is all I have left of my old identity.

We had very little choice when it came to buying a house, as we have been able to sell our previous property (gardenless high rise in a city) - so our budget was very, very limited - we bought from my husband's uncle, for a reduced price. We needed somewhere with a completely enclosed garden, off from the road and we are a bit closer to family - but the house we have needs so much work (boarded up windows, electrics hanging out of the ceiling, no kitchen units etc) - and it depresses me every day, I've given up trying to keep it tidy - my son just smashes everything in any case (TV, plates, glasses, pulls cabinet doors off.) I feel deeply embarrassed if anyone stops by.

I eat terribly - I have no inspiration or inclination to cook or prepare food.

My DH has a lot of interests which he can do here & socialises a lot - I'm genuinely happy for him, as there is no point us both being isolated.

Here comes the mad part - I have always wanted 2 children, and I'm 39 now - I know if I don't have another baby I will regret it for the rest of my life. I long to know what it feels like to have a conversation with my child, to experience all the things my friends do with their children, but I also fear I couldn't cope, that I would have another child with autism and I couldn't support 2 children with additional needs. If I don't have another child, it will be another source of overwhelming sadness.

Thank you if you got this far - I don't know what I'm asking - but if anyone can read this and see the wood for the trees, I would appreciate it.

I hear you 💐. I have a 4 year old non verbal autistic boy too who also regressed at a similar age. It’s hard.
How does your husband feel about having another child? Does he do his share of the parenting of your son? Would be be supportive of you taking some time out for yourself?

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

Does DS take melatonin? If not ask for it, if he does ask to try something else as there’s other things that can be tried.

It sounds like you need to appeal the EHCP. If you don’t already have the right of appeal you need to request an early review in order to try to get it. The therapies should be be in the EHCP and therefore funded. Dual placements can be in EHCPs in all LAs, but you might have to appeal.

If the 1:1 is detailed, specified and quantified push it back on the LA, it must be provided. If they need to fund it at a higher rate in order to attract more applicants that is what they must do. Email the Director of Children’s Services informing them of the situation and threatening judicial review. If that doesn’t work contact SOSSEN for help with a pre-action letter. Unfortunately if it isn’t specified and quantified it can’t be enforced - if this is the case you can address it via an early review and appealing if necessary.

Improving sleep and the EHCP situation will give you more time to focus on you.

Are you claiming DLA for DS?

Thank you for replying and I'm sorry you're going through something similar. My husband is pretty supportive - he does do his fair share of parenting, although his job progressed significantly whilst I was on mat leave - he now out earns me, and so his job feels like it take priority, I have the weight of responsibility for DS when he's at home. DH would desperately like another baby.

I do more of the mental load, tidying, cleaning etc - but to be honest I just wait until it's so bad it has to be done. He obviously does all the driving at the moment.

He's very supportive of me having time to myself - but I have no friends to see, nowhere to go. Most of my parent friendships fell away when DS' challenges became apparent. And if I ever do get time to myself I can't help but feel there is a cloud of worry & sadness that follows me around, I struggle to enjoy myself.

I saw a friend after a long time the other day - and all I had to talk about was DS' struggles, whilst she shared stories about her children's dance competitions and karate clubs, their funny little jokes and sweet moments. I hate the person I describe here, I barely recognise myself.

Thank you for your reply - yes we claim DLA.

DS has a prescription for melatonin (sorry I should have said that) but it makes his aggression worse, and we find if he falls asleep any earlier, he then wakes at 2am.

We're waiting for our social care assessment.

I will try and appeal the EHCP for the 1:1 - it's not that the funding isn't there, but they have put multiple ads out and can only find people for limited hours.

I think I don't fight hard enough at times, but I'm tired. I hate how pathetic that makes me.

Thank you for taking the time to respond.

If melatonin doesn’t work ask to try something else. Often the next one suggested is Alimemazine or Promethazine. You could also request a referral to a sleep clinic and for a home OT assessment to potentially look at something like a SafeSpace bed.

You are not pathetic. It is exhausting and unrelenting but with the right support things can improve. Sadly, DC whose parents push get better support. It shouldn’t be that way but it isn’t going to change any time soon.

Do enforce the 1:1 if it is specified and quantified. The LA must secure the provision. I have supported hundreds of parents and every time the school &/or LA have claimed not to be able to recruit they have actually been able to when the position was funded correctly (including one case that was funded at the teaching main pay scale) and enough effort to fill the position was put in because the LA was facing JR.

Sorry to hear you are struggling, it's rubbish 😔
I have a 4 year old autistic son so understand all you say. He also regressed at about 22 months.
I distanced myself from my nct group and what has kept me sane has been finding other local sen families in a similar position. Are there any groups you can join, even on fb. My new sen mum friends have been an absolute lifeline, as well as pooled knowledge for the ongoing fight to get the required support for our children. Sending you hugs, I know it's not how we hoped parenting would be xx

It's so hard isn't it?

Yes - I'm part of lots of SEN groups - although I'm too much of a distance from most to meet in person now. I do find them useful, but I lack the emotional bandwith to be a good friend to any of them really - and sometimes come away feeling more drained if that makes sense. I can feel the people in my life pulling away from me, as I have nothing to offer.

I'm just so tired and feel like there is no joy to be had in anything any more