Child with complex needs -how do you help your marriage

[Loopyloooooo]

So DH and I have 3 kiddos. Ages 12, 10 and 7. Youngest is DD who is 7, she has GDD, epilepsy, severe LDs, autism, ADHD.

Life caring for her is, quite frankly, relentless. Her care has taken over our lives. Our support system had shrunk to zero. We have noone in the wider family who can cope with DDs needs.

Her medical needs we can cope with but quite frankly her behavioural needs and physical care needs are something else. Just to give you an idea some of the specialist equipment we have includes baby gates every where (at 7), alarms on doors, wheelchair to keep her safe when out, safe space bed, incontinence nappies and changing bench etc etc. She can be violent, her behaviour is unpredictable, thrives off routine and she is unsafe when out. Today for example went on a very rare outing to the seaside. She dragged her shoes over the sand and continuously licked the sand and ate stones off her shoes. We couldn't stop her so put her in the wheelchair and instead she reached to the chairs wheels to eat the sand off them....this is just to give you an idea of how full on she is. She's not even safe on a trip to the local shop to be frank.

We have asked the council for help/respite. We're on a list...

Anyway DH said off the cuff today that the ironic thing is in all of this is that if we split up we could have every other weekend each to not care for DD and time to ourselves. Now he swears it was just idle wondering, loves me to pieces, loves the kids etc but TBH with the way our lives have turned out I don't blame him for his mind going there !

Other couples in similar circs, how do you help your marriages? DDs care is 2 to 1 and we don't have anyone to look after her anyway.

We try to give each other a lot of grace and I encourage DH to go out with friends etc when DD is in bed. A few times a year we will go out for a few hours together when the kids are all at school.

How do other couples keep it together and look after each other?

@Lesley25 if DS meets the criteria for children’s continuing care or adult CHC funding, I would definitely pursue that.

X-post.

my local council,is paying £28,000 PER WEEK to support a person with complex needs in a residential setting. I know that care is expensive but i cannot see how this figure is arrived at - are councils really looking at the best value for money.

lh

It depends on the persons needs, but £28k pw could well be the best value care (out of what actually meets the person’s needs).

This is amazing quisquam! How did you qualify for all these hours, if you don’t mind me asking.

I’m on this SEN forum because I have a mildly behaved Asperger’s profile child and also a partner (Im divorced with a BF I don’t live with) who has a very severely challenged ASD stepson.

ASD SS has been excluded from school and now in a specialist setting for intense behaviour needs. Also ADHD/ODD. He has no interests beyond video games, has very violent meltdowns, sometimes trashes house. He’s a danger to himself and his family. I don’t actually spend a lot of time with him sadly because I and my child have been attacked by him. It is not his fault but I can’t put my child in harm’s way. BF is very isolated and going broke. He pays for a carer himself, £1.5k a month, draining life savings and inheritance he was lucky to have but this was meant to be for his other child’s university education.

BF and ex applied for carer hours from council and got nothing. Zero. Ex relies on her ageing parents who can’t cope for much longer. Council said they didn’t see any ‘need’ for respite care. I thought OMG you spend a weekend with this kid and get headbutted and then say that! It’s just astonishing.