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

I think I’ve found it more difficult because I literally don’t get a second during the day to do anything because she needs constant supervision, wakes up extremely early, doesn’t go to bed until extremely late. At least when she was at school I had a few hours during the day to bath, wash my hair, make myself something to eat but since she’s been home all of the time, and because her behaviour is so demanding all of the time, I can’t remember the last time I washed my hair, had a quick shower and I’ve actually lost half a stone through lack of food because I’m so exhausted using all of my energy (which isn’t very much at all because of my health issues) making sure that she is cared for and fed and clean that I completely neglect myself, I actually put on some weight being in hospital because I had time to eat and finish a meal - and I’m so upset that it’s got to that

Ask for a carers assessment.

Your daughters social care needs should have been assessed as part of her education health care plan assessment, was this done? Often councils just ignore it or they just say 'not known to service' . This isn't good enough so ask for a section 17 assessment for your daughter.

You can get social care support written into your EHCP, next time you have an annual review, if you do get any support, get it written in. If they assess and it's still useless, as long as you appeal something in the education section of your EHCP, you can also appeal the social care section. Speak to Ipsea or sossen about this if it comes to it.

Also look for local parent Carer support charities/networks, you might find some on the councils 'local offer' website or google or look for fb groups. You will probably find a bunch of very supportive local parent/carers who can direct you to any local services who can help you.

Oh OP, I’ve got tears in my eyes reading your posts. I admit I was briefly horrified at the title of the thread (I have an autistic teenage DS) but your love for your daughter shines through. I’m so sorry that you’re going through such hell. 🤗

Get yourselves known to social services. This is truly no bad thing. There is such stigma attached to the phrase “known to social services”, but my family is, and I believe this is positive. They will only consider you for respite if they know you are struggling - please do contact them.

My boy weekly boarded at his special school for nearly 3 years, from the age of 11. He would probably still board now if they hadn’t closed the boarding house due to low numbers. It was the best experience imaginable for us all - and I really do mean that it was the best thing for him too - he adored boarding because he was living from Monday to Friday each week with friends who were all like him. It greatly benefited his relationship with his younger brother too, as they both grew up and matured during the years he was boarding and they now have a much closer bond. I just wanted to make a positive comment about boarding when needed - yes I’ve heard all of the “I couldn’t possibly send my child away!” comments over the years, and one was actually from a mum at a special needs support group.

Remember that you are a good person and you are absolutely allowed and entitled to feel like this. I hope you manage to access the support you and your DD deserve.

When you have your next EHCP review push to get a personal budget included which will then be able to be used for a PA even if just for a couple of hours a week.

Do you have any friends locally who she accepts? Would they help even if it’s just so you can have a shower?

On a practical note wokld things like the Wiltshire farm foods meals be any good because then you would “only” need to heat and eat rather than having to find time/energy to cook something?

OP I’d go on your LA website and search for:
Short Breaks for Disabled Children
Parent Carer Needs Assessments
Both of those are statutory things that all LAs must provide, and they should have the details of how to access them on their website.

Do you have a social worker for your own disability? Both they and the special school should also be able to signpost you toward support.

As soon as your DD is back at school and you feel up to it, make some noise. Don’t struggle on in silence. And ignore the couple of smugger than thou dickheads earlier in the thread. You are doing amazingly x

I think if you could find e.g. a Facebook group for parents of children with AN (try the links on the autism charity websites etc). We have a DC with much milder needs and we have had so many useful leads from a Facebook group of this kind. There are two of us and we've found it very hard at times. Knowledge is power! And you are strong not weak. Not impressed with your ex though .

@ANON3749 you don’t have to say which county you’re in but have you been in touch with your local carer support organisation. If you were in my county, one of our support workers could help you understand what you could be entitled too, offer a listening ear, signpost you to some PC support groups.

I've not read the other replies but I don't think you should feel bad for thinking a residential place might work well for you both. In an ideal world there'd be plenty of respite and support available to you, but there isn't and residential could work well. You'd still get plenty of visiting time I'm sure.

[quote RussianSpy101]@SionnachRua I think the PP was trying to get across there are people who foster and adopt children with AN. Okay the rest of her posts weren’t great but she is right, there is foster care available for children with SEN.[/quote]
Sorry but while I think you're being very kind to that poster, I completely disagree. Looking at all of her comments the tone is smug and sanctimonious, it's all about self-praise and rating herself above the OP. It's just not necessary.

I’m in Dorset

As for her dad, he doesn’t accept that she has autism and then massively underestimates how challenging it is.

He sees her for a few hours once or twice a month, always says no if I ask for help and if I tell him how bad things are he tells me to stop moaning all the time, that she’s an easy child to look after so it’s my fault I can’t cope with her.

He has never had to deal with a proper meltdown but if she does anything minor to do with her autism he shouts and tells her off for being “naughty”

Also OP, have you applied for DLA/carers allowance and whatever other benefits you might be entitled to? Again, it's a difficult process but it might help.

[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]
Wow. Judgemental AF.

I have a ds with severe autism. Age 5, he was a doddle compared with Op's DD as he was extremely passive.

Different kettle of fish now he's a teenager, though. We now have a social worker who is worse than useless (her random visits are highly disruptive for him and we have yet to see anything for them)

As for LA "short breaks", they are anything but and completely inaccessible for him, anyhow.

I understand. It's gruelling.

thorn I get where you're coming from. It's an uphill struggle with my violent 12yr old.

megletthesecond she is now 21 and in Supported Living.

On the whole she is so lovely and caring with me it's hard to remember how violent she once was.

It does get better...with the right support.

You sound utterly exhausted and under supported. Part of respite is knowing its there and that you will get a break.
I was a social worker in this areaof work. Often I was very frustrated and took the anger from desperate to have a break relatives. I had to fight and fight to get residential respite.
Have you got a social worker ? Have left work some years ago nor but Under the Children Act your dc should be idwntified as a child in need and has such plans to support the family ,including youas a carer, should be in situ.
If you have a care plan , regular respite needs to be part of that.. sometimes it was diffucult to arrange outside the home due.to various factors but I would arrange in home care so that the child more settled but the carer could go elsewere to re charge. Be that a weekend or an afternoon on a regular basis .. or both.
I dont think that you should try to sustain this without ongoing support .. good practice is preventative work and not management of a sitiation that has reached crisis.

Hi OP,
My colleague provided short break respite care for Barnardos. She would have the same child on an ongoing basis for example for a weekend each month.

When I have searched I have found this list of their services:
www.barnardos.org.uk/what-we-do/protecting-children/short-break-care
(put your postcode in the search box at the bottom of the page)

You could give their services a ring and see if they accept direct referrals - if not see if you can get a social worker to refer you.

I hope things improve when your daughter is back at school and you can get some more support in place.

PickAChew as an ex social worker
Random visits are not helpful I know. It is very important to have a trusted social worker and one that will fight for you in a resorce slim reality.
Sw s in this area need to be very creative and persistant and know how to pressure their own managers and present their case very strongly . Child protection takes precedence at times because it has to, and i feel very strongly that preventative work should be done with ongoing ,predictable support.
I will never forgot one day when I was instructed by a senoir manager to cancel two families respite due to.a child being admitted as an absolute emergency to a residentail facility who would have put these children about to have respite at risk. I tried and tried not to do this. The first exhausted family accepted it as I had arranged ongoing smaller sets of respite and knew and trusted me. The second,who had a holiday booked told he to f ...off. I.so understood, but at the time as a very proactive and experienced worker who fought the' system' daily, on this occasion I had no option and it stays with me still today.

@Tiddleandplonk the whole system is completely broken 💐 Our issues are, in a large part, outside of the system, though and I need to get down to some letter writing when endlessly grunty, shouty boy is back at school and I can string a coherent thought together without getting very angry. (one issue being the complete lack of any paperwork which makes the past 18 months of involvement as good as nothing)

So sorry you find yourself in this position.

The load on parents of children with additional needs is huge and it sounds like you aren't even getting the paltry additional support that is available.

I seriously hope that SS can come up with something for you. Getting a bit of a break away from it is so important. Ignore the holier than thou brigade - I think what you are feeling is entirely normal and I meet a lot of families where there is a child with additional needs.

@ComeonJulia I'm telling you now you will absolutely meet your match.

My friends are foster careers and really struggle with some of the NT kids. Just because you can manage your DS autism - with your dh help I may add, doesn't mean in any capacity you can manage other children SN and I'm staggered that you think they are all the same!

Thats if they let you foster because if you have a child or adult with special needs they may refuse you as you won't be able to focus on the foster child.

I taught SN children how to swim from autism to brain damaged. A lot of the parents would leave the pool and go and sit in their car, just to have 30 mins away from them. I did not judge them for that, I bloody admired the strength they had to face these issues day on day. One poor parents had non verbal autistic twins and they were around five when I taught them. They were really really hard work how the fuck these parents managed day in day out I will never know.

If you do get through the fostering process make sure you do some training as your going to have a shock!

You're not a failure, just human xx 💐

@ANON3749
www.carersupportdorset.co.uk/

www.dorsetcouncil.gov.uk/-/specialist-short-breaks

Hi
You definitely deserve lots of help and dont feel bad for your words. Can I ask if you jave exhausted all ur options? Have you tried the biomedical route? O.ts? Aba? Speech. Everything? If so and nothing has helped then definitely search residential and go with what you feel is best

We all have our breaking point when we are not getting the help needed for our child or children can be very difficult:( x