AIBU to consider residential care for my 14 year old high-needs daughter?

[Yellowcucumber]

My dd is 14 and the youngest of her siblings. She has asd, adhd, severe learning disabilities, epilepsy and she’s non verbal. One of her older siblings also has asd and adhd but doesn’t have as high support needs.

DD has always been challenging but she is now spitting and hitting me constantly. She will walk up to me and spit in my face 7-8 times a day at least. There doesn’t seem to be any particular triggers that are predictable. She goes to a Sen school, is medicated for the adhd, recently we’ve got 4 nights respite a month but she’s only done two one night stays so far as she became quite distressed so we’ve started doing it slowly.

She tends to hit the sibling with asd so they don’t come out of their room including eating their meals upstairs. They cannot bear to be around her. She randomly hits another of her siblings when there has been no interaction so they avoid her by staying upstairs or going out.

We also don’t take dd out as she doesn’t want to go and her behaviour in public is unpredictable (she was close to kicking a random stranger recently). She has her own room, a room downstairs as well, a weighted blanket, yoga ball, visual timetable etc. She has access to a communication app but won’t let us model it. Speech won’t work 1:1 with her as she isn’t compliant. The kids have locks on their doors so she can’t get in at them nor break their things when they come down. It’s a very low demand household overall.

She doesn’t tend to go for her dad as much. It’s more me and the kids. School report behaviour as mixed. It’s significantly better than at home.

We have a social worker and our last resort is a section 20 and get social care to find a residential placement locally so she can still go to her school. But I feel guilty saying we can’t cope. We’ve had a behavioural team in who left us with visuals and said they think we’re doing all we can. The other team who could come in the social worker says it would be more of the same. I’ve dropped my work days. I collect her from school as local taxis won’t take her even though she travels alone.

But the guilt is awful. I feel embarrassed and ashamed saying to our social worker that we can’t cope. I hate the thought that she thinks I’m abandoning her. But I don’t know what to do. She has always been a mummy’s girl but now it seems like she hates me. I know hormones mixed with her disability don’t help. But it’s exhausting being spat at constantly and hit. I’m scared for my children one of whom says they don’t feel safe at home.

I haven’t read all of your post but just wanted to suggest that you report your post straightaway to @mnhqand ask for it to be moved out of the AIBU section and into SN Teens where you should only get replies from MNers who also have Teens with SN and know what the lived reality of that is.

You need to do what keeps all your family safe and functioning. The right residential car could be transformative for her and your other children. I would start investigating what is available. It might take some time to happen even if you decide it’s what you want.

That sounds horrible for you all. I agree that you need a solution that keeps everyone safe. You and your children’s safety and wellbeing is important and I would reframe it as being not about not being able to cope, but the situation not being tenable for the safety and happiness of everyone involved. Of course you want to protect her and care for her. But it’s perfectly reasonable to say that you cannot do that to the detriment of the rest of the family’s safety and wellbeing. Don’t let guilt be the reason for making or not making a decision.

I think i have replied to you before?
I also have a severley autistic non verbal teen
Who has some extremely challenging behavor at times
So i get it
It.might be a long wait though my friends son is in a residential school and it took over 12 months after they reached crisis
Its also a 600 mile round journey

You don't have just 1 child so you can't let your daughter rule. You have to consider the other children and your family. There is absolutely no shame in admitting things are not good especially for your other children.
As a teacher I saw a few cases like yours and honestly it's nothing to be ashamed of. You have tried. Perhaps care is something that will help her too. Be brave, your other kids need you and you need to look after yourself

It's not fair on you or her siblings, and I think you wouldn't be unreasonable to ask for a residential placement. No judgement from me. It sounds very tough for you all, including her.

Would a residential school be better as she could have a properly 24/7 wrap-around curriculum?

I have been in your position: 4 DCs, one with multiple special needs (DS2) and at 14 years old, behaviour so challenging that we couldn’t cope with him at home. He targeted his younger siblings though, so there was a safeguarding concern for them. I felt guilty too, but honestly, DS2 going into care was the best thing for him and for the rest of the family. He spent some time in shared care before going full time to a residential home. The staff were amazing and treated him as a young man, encouraging him to be as independent as possible. He had weekly home visits.

18 years later, he is now in supported living. He appears to be very happy. He has good relationships with all his siblings. Do send me a message if you would like more details.

You shouldn’t feel guilty, embarrassed or ashamed saying you can’t cope.

I would also request an early review of DD’s EHCP.

Even if DD can’t engage 1:1, is SALT (and at least OT, CP and EP) providing support? They can work more widely even if DD can’t engage directly 1:1.

As well as the respite overnight, do you have other support from social care? They can put a wider care package in place. This can be a substantial care package, but social care often try to deter parents from this by fobbing them off with a few hours with funding for nothing more than an untrained PA.

Forgetting local taxis say they won’t take DD, do you want school transport rather than taking DD yourself?

For your other DC, if you haven’t already, have a look at Sibs and your local young carers service. Although how helpful the latter is depends on where you live.

Placing your daughter into residential care doesn't mean you are abandoning her. You could theoretically spend as much time with her as you do now, but at least your other children would feel safer at home. You could still pick her up from school and then e.g. have dinner with her and watch a tv show with her before saying good night and leaving. I know several adults who visit their spouse with dementia, psychosis or other severe mental health conditions daily in their residential home, some literally spend all day there and even take the family dog along. But it's easier for them that way, they get a good night sleep and there are support workers present to help with everything. Many say their relationship has become closer as a result.

We’ve been where you are, but for medical reasons.

Look at it like this - if DD goes to a residential school, then you get respite at least from Monday to Friday, but possibly far more. There’s weekly, termly, 48 week and 52 week placements afaik. Even with a 52 week placement, you can see DD whenever you like, outside school hours. You can either go and see her there; or have her home for a weekend or time in the school holidays - whatever you can cope with. Social workers usually want to see the family are maintaining contact?

As and when you do see DD, you will be refreshed and can spend quality time with her, rather than feeling burnt out all the time. The siblings will also get respite, and have your refreshed attention too.

It’s not about failure; but recognising sometimes as parents, we can’t do it all 24/7; and probably few people could. You have your other DC to think about too!

It might not be as simple as that
I hsve a child with similar needs so im absolutley not judging the Op
But the realiity is a suitable placement might not be near home
A friends son is in residential school which is a six hundred mile round trip
As its the only that could meet his needs
She cant just pop in daily to see him.

I don't think it would do any harm to seriously investigate the possibility. It doesn't sound like the current situation can continue.

DD1 has been in three residential specialist schools and one FE college. One was a fifty minute drive from our house, and the other three were one and a half hours. Obviously, crashes on motorways could make the journeys longer. We never wanted to visit DD1 for a day; but we often had to go for meetings in the week, which were quite doable in a day.

When I met the parents of local children or young people, they were usually day students, not boarders. There was the odd one, who lived five or six hours away, but it wasn’t the norm.

I imagine most parents, who have reached the point of seeking residential school, because they can’t cope anymore, won’t have the energy or desire to pop into school every day to see DC. They want the respite Monday to Friday, and either want to visit DC in the school at a weekend (if they still feel they can’t cope) or have them home for the weekend? It’s about quality time together over quantity?

DD1 now lives in a specialist care home, a considerable drive away. She says some residents never go home - their parents visit them. We video call her three times a week; and she comes home for a week every three weeks, plus Christmas, Easter, birthdays and we take her on an annual summer holiday.

We find video calls are a god send!

How are you now @Yellowcucumber? Have you had time to read the responses? It sounds as though most of your days are about survival