To be upset at lack of weekend help with SEN child

[Crochetowl]

I think I mostly need a rant.

I have 2 children, DS 6yo and DD 3yo. My husband works nights Fri, Sat and Sun. My son has severe learning disabilities with challenging behaviour. He is nearly 7 but developmentally he's 18-36 months.

This means that at the weekend, we are effectively trapped at home. I cannot safely leave the house with both of them. When I go out with someone else, my son needs reins and an adapted buggy. Even if I only had DS that would be challenging because he often needs physically holding; his behaviour and needs are very similar to Rosie from There She Goes for reference. With my threenager it's just unsafe.

DH likes his job, and if he changes jobs or his weekend shifts there will be a pay cut. But he works every single weekend, meaning we cannot ever go out as a family and I'm trapped at home - unless I ask FIL and MIL for help.

Leads me to the next problem: MIL and FIL are my only alternative childcare or adults who can help me get out of the house, or they will have my kids for a few hours so I can sleep. But now it's the summer. Out of the last 8 weeks, they've been away for 5. I know rationally that they're more than entitled to be enjoying themselves, but I've had a good cry today already as I have no respite. My son is frequently awake all night. He is in nappies. This weekend he's refused to wear them so I'm constantly cleaning up bodily fluids. They're amazing when they are here, but I dread the summer as it means a long stretch of no help. I don't expect them to help every weekend but I'm now on my 4th consecutive weekend stuck in.

We have a social worker who will hopefully help me to access a PA but that is not guaranteed. I just feel very abandoned. In laws keep telling me about the great weekend they've had again and all I can think about is "good for you, but you've left me to struggle".

AIBU to tell DH or inlaws that something has to give?

Have you looked at PANDAS? Just a thought raised from what you just said

I think your in-laws are being insensitive. I'd explain to them nicely that although you're pleased they're enjoying their retirement, it's something you may well never have, along with zero respite in the meantime. They should be more considerate.

I’m in a similar situation. My 10 yr old has learning and physical disabilities. My husband works 6 days a week and on a Sunday he lays on the sofa. I have no help, my in laws wouldn’t dream of ever helping they do of course look after their other grandchildren who are neurotypical.
im sorry I can’t offer a solution but I wanted you to know you’re not alone x

https://www.webmd.com/children/what-is-pandas-syndrome

What kind of help.so.you imagine the Op.would get if she did that?
You can't just leave a severlry disabled at A&E and expect socisl.services ti.magic up loads of respite
I.have a severely disabled child in theory we are supposed to.have two nights a month respite it was agreed before Xmas ,we haven't even had a visit yet due to.lsck.of staff and my child was to pushed to the top of the list when his brother was critically ill and in intensive care in February
Thousands of families al!over the UK are in desperate need of respite ,imagine if we alk tried to blackmail social services.🙄

Too much of an assumption? Was that the name of the medical school you went to? I don't think you understand the trajectory of how developmental delays play out so it's probably best to stop commenting. And your previous comment was clearly nasty - the faux innocence is so cynical.

Well both DC are here now so your post is spectacularly unkind and unhelpful

Has the council carried out a full care assessment and carers' assessment? If not, ask them to do it immediately - they have a statutory duty to do that anyway. Talk to them about respite care and someone to take your child out and about occasionally to give time to concentrate on your second child.

I hear your rant. You have to be in crisis for support services to throw you any support in my LA and then its so minimal as not to be of any real help.
I understand directing your frustration at your in laws, and I can read, so also see that you know rationally that there is nothing you can do about that.

Seems your options are
. Seek external support, respite, PA at weekends etc
. Husband changes to weekday shifts opposite to you
. You swap with husband so he does your shift pattern for a while and you do his!
. Carry on as you are

I hope you are able to make some changes that ease the situation, its a long road and its important to you and your family that your needs are met too.

Do you claim all the benefits you’re entitled to for your son?
You could try contacting your local college, speak to head of childcare course.It’s possible one or even two students might want a weekend job helping you out, even if it’s just alternate weekends. Say you want Level 3 students, second years if possible. Great for their CV and help for you.

I would switch shift patterns with DH if you're able to. He doesn't get to opt out on the weekend slog because he finds it hard.

Really?

Do you expect op's other friends and relatives to also tip toe around like this too? You know, the ones who are offering ZERO help? Or just the ones kind enough to recognise where help is needed and are actually stepping up and doing it??

Forgot it’s end of college year. Duh! End of year one students would be fine and even though college has finished there’s usually staff still working.

If your DH has 4 days off in the week, could he do more housework which would free up one of your days in the week too? I do totally sympathise with you. I am not in your situation, but my DD (especially when younger) was a lot of hard work and it seemed to manifest more at the weekends after being at school all week. My DH was always able to work weekends because he knew I was home. I really struggled.
Are you able to do something for yourself once or twice in the week? I’m just thinking that if you are able to have a bit of fun, you may not resent the weekends so much.

I agree with this. I get that you must be feeling on your knees and exhausted but it feels like all your anger is directed at your In Laws and not the person who is also responsible for sharing the load- your husband.

This is completely misdirected. You need to have an honest conversation with your husband about this and come to some kind of compromise. Why wont he consider changing his job if you are feeling so utterly exhausted? I'd be directing my anger at him, not my ILs.

Are in laws even 'retired'....they may both work. Not unusual

@BusyInTheGarden Yes, really. Just like most of us are sensitive enough not to go on about our luxury holiday or new patio to people who are skint and struggling. Or to keep mentioning how well our children are doing to someone whose children have learning difficulties. If you're even vaguely considerate, you know when to shut your mouth.

Even if OP could find a college student willing to work every weekend of their summer break, that still doesn't solve her main problem. She has a husband who refuses to parent. The solution to the problem is that her husband needs to change his shifts / get a new job and actually start to pull his weight with parenting.

DH is contracted to work only weekends. I have asked him a few times now and he said OK, but he hates change. He says he feels guilty but financially we need the money. I've found him employment that pays more but it doesn't have as many benefits - still isn't keen. It feels like an emergency for me

Then start getting angry with him- he doesnt sound very supportive or considerate of you at all and theyre HIS kids too

I don’t think it’s fair to say that Dh isn’t parenting. OP said he works 3 weekend nights, which means he’s (hopefully) sleeping on Fridays and Mondays.

It is crazy and nasty because you stated you didn't understand and then went on a rant as if anyone would rationally choose to make their life harder.

He has always had a delay, but then he's just got stuck... then lost loads of progress. Not only that, but having a sibling actually benefits SEN parents ultimately. Long term and short term. Not that that's why I had her, but it was a factor. I don't want him to be alone when we're gone.

Tell me I'm being mardy after causing my own situation is nasty. End of.

This sounds really tough for your and agree that you husband should do more to help with housework during the week. You mention that the cousins are also severely disabled - does this mean your IL's also help out with the cousins?

Get a social worker
Ask for direct payments
Get a PA

I have all of that and it makes such a difference.. otherwise we are housebound while he plays his Xbox as that's what he likes doing 🙄🙄

At two.my severely autistic severe learning disabilities, son didn't appear much different from his peers cap art from lack.of speech ,he was my second child and I had no p!ans, to.have anymore
He's 13 now completely non verbal , and cognitively around 2/3 years of age .

Have you got a local child care course at a college? When my DD was around 6 1/2 with quite severe extra medical needs, her brother was around 2. I contacted the local college and a couple of students used to visit to play with DS and gave him lots of individual attention for a couple of hours once a week for many weeks. I think they used it as part of their assignments as they had a tutor visit regularly too. My DD's care needs remained my responsibility but it meant that DS got the individual attention he really needed ( and which I could mostly give him once DD's care needs became less severe as we knew they would)
DH worked long hours and I worked every weekend when he looked after both children on his own. Through the week DD was at school when well enough. We chose not to use child minders etc and had no help from family. For hospital appointments and operations ( 13 inside a few years) we just had to take unpaid time from work, me to do the London visits and stays and him to look after DS at home.
Also what about Crossroads? I really can't remember if they will help care for children though.
Until you have a PA sorted out it really may well be that you have to use your son's DLA allowance to fund care.
I really do sympathise particularly with the challenging behaviour but don't accept that your IL's have any responsibility to you. Your DH, however, does and it's clear that something has to give. It sounds as if he needs to change his job