To realise I’m better off without my SEN child?

[ANON3749]

I feel so shit for writing this post and it’s absolutely soul destroying for me so please don’t judge.

I’ve got a 5 year old child with moderate-severe autism, her dad lives hundreds of miles away and is useless and I don’t have a lot around me in terms of friends or family support to rely on, on a regular basis.

I’ve also got chronic mental and physical health problems.

The school holidays have been hell so I’m aware things might settle down when child is back at school again.

The last 6 weeks have been hell, from the minute my daughter wakes up until the minute she shuts her eyes (which is about midnight because her autism is causing a lot of problems at night time and messing around/not settling) she screams, has meltdowns, hits me and herself repeatedly, won’t tolerate any noise so can’t have the TV on, washing machine on, hoover on or anything at all so just have to sit there all day.

Taking her out is even worse, she runs off and has no danger awareness so would pretty much need her strapped on to me somehow because I have mobility issues so can’t run after her if she was to run in the road (we don’t have a garden)

I was recently in hospital for a few days (my mum reluctantly had her but made it clear she won’t be doing it again) and it made me realise how much easier my life is not having to deal with it all the time and I didn’t even miss her as much as I should have done, I realised how much worse her behaviour is actually making my health conditions (I felt 10x better in hospital, have gone back to square 1 again since being home)

I have seriously even looked into residential schools so that I don’t have to deal with her all the time because I just don’t have it in me anymore

I feel like the biggest failure in the whole world and disgusted with myself for even writing this but I just don’t see a way out of it, it’s getting to the point where I dislike and resent her so much

Is she non-verbal? My friends daughter was non-verbal and she went privately to speech therapy. She started talking at age 7 and hasn't stopped! A lot of her frustration was that nobody understood her.

Regarding respite. You need to call social services and tell them you need emergency respite. Most respite services have rooms assigned for emergencies.

Residential school- from what I've heard they are amazing. And for those who were negative, shame on you. The workers in a residential are trained to implement behavioural programmes for kids with autism. Her mother is exhausted and need a break.

You’re a fosterer? You have absolutely no empathy and it’s extremely vulgar. Op is struggling ffs.
You make it sound so easy 🙄 @ComeonJulia

@Porcupineintherough

I am getting so sick of seeing posts like this. Why do accept a system that provides so little support for families /parents with disabled children? We see posts like the OP's and say " contact ss and ask for respite" but we know the respite provision is so minimal its hopeless. Why are there no (subsidised) sn playschemes or childcare available in school holidays ffs?

Sorry OP my ranting doesn't help but YANBU and it shouldn't be like this.

There is a special needs play scheme in my LEA, the problem is that its massively over subscribed and they are limited in what they can offer.

It's really shocking that residential schools are so hidden and scarce in this country. As if it's just a thing to get on with - not a disability that seriously, seriously affects those living around them. It doesn't mean that the parent doesn't love and care for the child deeply.

I work in a residential special school and if that is a route you decide to go down in the future because it is what’s best for your DD and for you then you should absolutely not feel guilty. They are a very legitimate and positive option for a lot of children and families, however 5 is very very young and in my experience unless things have reached a very serious crisis point then it’s unlikely a residential placement would be considered at this point.

Do you have a social worker? I would definitely look into applying for respite, it is unfortunately very hard to come by and as previous posters have mentioned the hours can be laughable but the fact you are a single parent with your own disabilities should strengthen your case.

There may also be activity clubs which your DD could attend during school holidays to give you a break. Have you looked at your LA’s local offer to see if anything is available? I’m assuming she is in a special school so I would also ask whether they know of anything that might be suitable for her to attend. I would also let the school know how much you are struggling, the school staff will likely have a wealth of experience and will hopefully be able to help by suggesting strategies you might not have thought or they may be able to offer additional support through family link workers etc. My school offer parents of day students support around sleep, communication, sensory integration and behaviour and also have parent support groups so that parents can meet others dealing with or who have previously dealt with similar issues.

I understand it is really hard parenting a child with complex SEN and unfortunately there might not be an instant solution to some of the difficulties but there is support available out there which might at least help with some of the issues you face and lessen the load somewhat.

[quote ComeonJulia]@SpicyJalfrezi you would be surprised how many adults are willing and able to provide love and support to a child with additional needs, me and DH being 2 of them.

My own son has severe autism and it breaks to my to see how some children are having to live due to their needs. We will be starting fostering in the new year and are only open to children with additional needs.[/quote]
I sincerely hope you get turned down with your nasty attitude and silly opinions.

Op you’re not super women, it’s hard on people who don’t have their own health issues to deal with. Don’t be so hard on yourself, I think residential school would be a brilliant idea.

You are doing amazing

This must be so hard !!!

Please please be open and honest and look for extra agencies to get involved they are there to help

So sorry you have felt so alone

[quote ComeonJulia]@CloseYourEyesAndSee exactly! She’s a human who deserves love and support and this woman can’t give it to her.
She needs a family who can Love, support and encourage her. Who has the time and patience to know and understand her.

She isn’t getting that and it’s heartbreaking[/quote]
What's heartbreaking is that there isn't enough to support for children or their parents, and that judgemental arseholes such as yourself make people feel like they cannot be open and honest about if they're struggling. You choose to adopt, along with your husband, good for you. Being a single parent with hardly any, if any support to your own child is world's away, I hope you show more compassion in real life.

Also to add to the PP who are throwing judgement towards OP, maybe save it for her DDs useless father? OP is actually there for her DD and clearly trying her best. No word on how he needs to step up to the plate but rather throw mud at a woman who isn't acting like "the perfect mother" in their eyes.

You are not evil!

From 1 mother to another who is seriously ill and has 2DC who are autistic the residential school could be a life line for both of you!

I know a family who have twin DS's who's autism was on the more severe end of the spectrum and after years of struggling they decided to try a residential school and it made a huge positive difference to not only the boys but to they're parents as well.

You can't pour from an empty jug ANON 3409

@Sirzy

There is absolutely nothing to suggest that she isn’t loved and supported. But the OP is a human too with her own needs. If your going to be a foster carer I hope you learn to be a lot less judgemental of people!

OP have you considered asking school if any of the staff that she is familiar would be able to help with occasional childcare during the holidays to help you?

From the op it does actually sound like the child could be better supported. It is not the op’s fault because it sounds like she herself needs support in this hard situation but isn’t getting it. I do wonder what is easier - to get meaningful support in such situation or to give the child up for adoption? And what is the social worker doing…

@x2boys exactly. Same here (my friend has 2 autistic boys which is how I've heard of it). But it's hugely oversubscribed so many families have to go without. How is that ok?

Sorry ANON 3749

OP what is the situation right now?

Have you talked to GP, HV , SS? Ask for respite care, just so you are on the list .

Sleep issues, have you asked for melatonin, tried weighed blankets etc?

Any chance to move somewhere closer to friends and family and more support?

YANBU it's exhausting and relentless, for one person to go through it all on their own day in and out, no wonder you get overwhelmed. You need to look after yourself so you can look after her. I know parents of children with SEN who would look at a busy road and consider walking in front of the car because a stay in hospital would give them a break. You are not alone. You are not a bad mother. You're struggling and need help. You're human.

I wish I'd reached out for help earlier. I struggled on until dd was in her teens, also a single parent.

I was begging for help and on my knees by this point. Being attacked constantly and poor dd was broken.

I left her at the offices of our local SS with an overnight bag. Miraculously, respite care was found that day.

We were then offered regular respite and when that broke down workers came to out house every day.

I'm not suggesting this is the best route and I'm sure people will be absolutely horrified and judge me as some kind of monster...

It's certainly not the answer for a 5 year old. It's just an example of how impossibly difficult it is to get support through any other means.

@Porcupineintherough

I am getting so sick of seeing posts like this. Why do accept a system that provides so little support for families /parents with disabled children? We see posts like the OP's and say " contact ss and ask for respite" but we know the respite provision is so minimal its hopeless. Why are there no (subsidised) sn playschemes or childcare available in school holidays ffs?

Sorry OP my ranting doesn't help but YANBU and it shouldn't be like this.

£££££

There isn't the political will to properly fund this.

I've been saying for years that the only way things will change would be if all carers took the people they care for to their local authority at 9am on the same day and said I cannot do this any longer.

You see how fast money would be found!

But of course, that's the one thing we feel unable to do because these are vulnerable people who we love and who may be terribly frightened.

So those in power know that we as a group will not do the one thing we could do to force change and get proper funding in place.

Sorry your finding things hard op. Have you been in contact with any charity's that may be able to help you . Would a disability pushchair work for you ?

I just want to give you a massive hug, OP. My twins are almost 5, non-verbal, very limited understanding and delayed across the board. They attend a specialist school now (had an epic double tribunal last year to get them into the right school) which is helping them so much, but summer has been a complete hellscape. I have chronic health issues myself (currently in agony and on a lot of morphine) and I can’t even take them into our garden on my own. One rarely sleeps and when he’s awake he’s screaming. I am at the end of my tether despite their summer holiday only being 4.5 weeks and having my husband to share the load. You must be completely and utterly wiped out in a way most people cannot understand.

Do you have a disability social worker? Is she at a specialist school?

You need to fight for support - it’s awful that it has to be a fight, but as you know everything is.

If you haven’t already, you need an urgent section 17 (child in need) assessment for her, and a carers assessment for you. You need respite urgently or you won’t be able to care for her at all - they should understand that respite now is better than you ending up seriously ill and them needing to find a foster placement.

We were given 8 hours a week of one person to help during school holidays just so they can be taken out twice a week, and 1 hour a week to save up for some babysitting. Unfortunately our PA hasn’t been able to work at all over summer due to a serious family emergency so we’ve been on our own and it has been brutal. I am going to have to insist on a carers assessment as we are going to need some actual respite at some point (no family to help us).

What other things are making life difficult and could be made better? We were finally seen by the sleep clinic this week (two year wait) and slow release melatonin is on the way via courier to see if that helps.

We got an assessment from social care OT and they provided us with safety beds so they are safe at night which makes a massive difference. They were also going to pay to have our loft converted so they have separate rooms but we are going to move instead as we’re in a terrace and they’re getting louder. They can also provide other adaptions. There are charities who can provide things that might help at home (like sensory equipment to help her regulate).

I know you feel desperate right now. Once she’s back in school, focus on getting the support you need in place. You’re doing amazingly well under circumstances that would break anyone and you can’t see a way through right now, which is understandable.

You can do this

@ANON3749- I can really empathise. I wrote a similar post a few weeks ago, our situations are eerily similar. I managed to get some help by going to A&E and refusing to leave until I was helped by social services and whilst it hasn’t been long, they have helped and things feel a little more manageable.

Are there any local support groups? Op you need help no one would find the situation you’re in easy.

Would you give your five year old child up. for adoption @BFrazzled ?
I dont doubt the Op loves her daughter very much, school holidays are very, very hard when you have a child with complex disabilities, i know im living it, The Op needs support.

I totally relate OP. Two kids with learning disabilities here and by the end of the summer holidays (I’m in Scotland) I was feeling like you. Found myself fantasising about hospitalisation and googling how to get kids taken into care. We got 3 days respite in 7 weeks from social work and even that took so much work and advocacy to get.

They’ve been back at school 2 weeks now and things are starting to feel more balanced again thankfully.

Much much love and respect x

Watch Katie prices documentary "Harvey and me'. She talks about putting her son Harvey in residential and how difficult of a decision it is but that it's just too difficult now as he's older and more difficult to manage and he needs propercare . Hugs

And yes, respite provision can be shocking which is why you need to be the person shouting the loudest, and you need to be clear that it’s either respite or full time foster care or a residential placement because you can’t cope.

Then you may get something resembling enough respite between that and school.

Holidays are a complete nightmare when there’s no accessible childcare. That’s something else you need to insist on - they can fund a 1:1 to support them through at least a part time provision in holidays, I know a few people who have this now.