I’m struggling with Dd

[Lailatov]

Dd autistic in a specialist primary school. LD are quite significant. We went out on what should have been a nice family day out. Dd was so difficult to manage. She is predominantly non verbal and she has limited understand of verbal language. I ended up having to drag her out of a play area kicking and screaming. I wouldn’t be surprised if someone had called social services on me. It was awful. The older she gets the harder it is. I’m so tired of it. I’ve managed to keep a full time job somehow but now they’ve been putting more demands on me and asking me to come into the office more often. I don’t think I can manage it. I’ve explained my situation but they have said it doesn’t make a difference. I also have a child in pre-school, obviously too early to tell if they are definitely not neurodiverse but they don’t have the same delays as dd. I’m so worried about being the best parent for them too. Also DH is wonderful but due to dd we don’t get to spend any time together. We pretty much sleep apart most nights, dd wakes up at 5am most days, she bangs really loudly on the wall and the neighbours have complained, so one of us needs to be with her to prevent this happening. I’m not sure of the point of my post but I just wanted to get it out.

I’m not surprised that you’re struggling. I think most people would be.

If you’re at work is there a Carer’s hub and is there anything like an employee assistance program?

As for the days out, it doesn’t sound as though going out all together is working right now. Would it work better if one of you went out with DC2 and the other stayed home with DC1?

I agree with splitting up for days out. We do it a lot.

Has DD had a home OT assessment? That could look at how to make the bedroom (and house in general) better meet DD’s needs.

Have you had social care assessments? A carer’s assessment for you and an assessment by the children with disabilities team for DD. Also have a look at your local short breaks offer.

Do you have a social worker?

it is through them you can also seek respite and carers. As my son got older, around 9 , we recruited carers through his school and via direct payments which funded this.

This enabled me to go out with my younger ds and husband- this option will be open to you too.
Then there’s overnight respite which will help, only accessible through. Child in need assessment via a social worker.

I've had a bit of a mare with my son this weekend refusing to wear any clothes and he sounds similar. We don't really go to the park anymore as he refuses to go in, but he is at the age where it is hard to manage if he does. We find places like the forest easier, or quieter beaches if you are near one on a hot day better than going anywhere where there are lots of people eating etc. We just use reins to keep him on track.

I also have a special needs buggy and he quite likes being wheeled around in that and that way I get to go out for a walk. He stims in a very loud and obvious way so I do get some looks!

Local charities often offer play dates and your LA might offer short breaks (don't be misled by the breaks bit in the name though, because if you have a child with high needs you have to stay with them). At least you are around other parents that are in a similar boat.

We also have a disability social worker and get direct payments through them. I would stress the impact on your other child as well as yourself to build a case.

if you have a child with high needs you have to stay with them

Just so you are aware in case you wish to challenge it, your LA should not be requiring this.

Thank you for the replies. Everything really got to me yesterday. Today was an improvement but no day is going to be without its challenges. I wish I could dedicate more time to DD, she has skills and can engage in the right setting but naturally she will revert to her own world and amuse herself playing alone.
We don’t have anything set up, no carers or respite. We haven’t even applied for DLA, the only reason being that it’s such a long form and we’ve never got round to completing it, although it’s on my mind all the time to finish it. I never even stopped to think about getting a carers assessment or anything else. I’ll definitely have a look into this.
@perpetualplatespinning we haven’t had a home OT assessment. Thanks for that suggestion. I’ll also look into that. It would have to be private, the OT in my area is completely non-existent unfortunately.
I think I do need to accept that family days out need to be with one child or the other, not both right now.
@BunnyRuddington thanks for the suggestions regarding work. I do work for
a big company so I will have a look at what they offer. They do have a carers hub but I haven’t joined yet. I guess I’ve been in denial.

On their website, Contact has model letters you can use to request social care assessments.

Do apply for DLA. Cerebra’s guide is helpful. You could look for a charity who could help complete the form if you would prefer e.g. CAB. This could enable you to free up money elsewhere to outsource some things at home if you don’t already e.g. get a cleaner to take some of the demands off your shoulders.

OT shouldn’t have to be private. There will be a service providing home OT assessments in your area with the aim of ensuring the home better meets DD’s needs. It is often separate to the normal OT department. If you google ‘OT ‘equipment, aids and adaptations’ and your local council you should be able to find the department - if the service you find a number for is only for adults, they should be able to signpost you to whoever covers children.

And if DD needs OT, it should be in her EHCP. Although many have to appeal for it.

I totally get it @Lailatovthe overwhelm and the denial. It took me a while to realise that I also had ADHD and lack executive function which doesn’t help when you’re trying to get help for your DC.

havent got much advice on that sorry but I’m here for a handhold if you want somebody around whilst you fill in any forms

@perpetualplatespinning thank you, all of that information really is so helpful. I wasn’t aware of any of it. Dd does get OT input at school, so I could also speak to them in the meantime while I try and get a home assessment through the council and see if they can make some recommendations for now.
@BunnyRuddington thank you, that’s really kind of you. Funnily enough I have ADHD too! I struggle to get anything other than my regular tasks done. Perhaps I’ll update when I’ve completed the application as an incentive to get it done!