Struggling badly with DS / Autistic

[Astronaut1298]

I have 2 children, ds is 5 diagnosed with ASD/Learning disabilities. He's non verbal and not potty trained. He also cannot feed himself at the moment

I work 4 days a week. 2 of the days I work are weekends (I work from home on weekends)

During the week DS does okay, but during the weekend he becomes extremely frustrated. I don't blame him as I am working so I can't take him out, I can't give him all my attention as I am working. My husband works opposite days to me so he's not around on weekends. I'm finding it hard to juggle work, cooking, feeding DS, avoiding all triggers which is hard as DD is always trying to play with him which he hates, and as a result bites her

I used to work FT Mon-Fri however it didn't work for us as DS's behaviour got worse and the childminders of course could no longer have him due to the other children they had so working how we work now helps during the week and we have an okay routine

I am really struggling as every single weekend DS has multiple meltdowns. I try to calm him the best way I can but it only last mins before he starts again

We have no family help. In laws don't want to take him as they say he's too much. I don't know what to do. I was thinking about getting a carer for a few hours on weekends to take DS out to soft play/park etc but when I try to look I can't find anyone that's specifically experienced with SN children.

Does anyone have any websites that I can go onto to look? I've just been looking on childcare.co.uk

I also have to take calls and it's starting to give me anxiety as DS will scream as loud as he can and start kicking me/pinching me while i'm trying to speak. I feel so down and alone.

The flat gets so hot as I can't open the patio .we are on 2nd floor and DS has tried jumping over the balcony. Landlord refused to let us put bamboo over it to stop him climbing so we have to keep it locked even in the heat

Windows are barely open as we put the child locks on them to stop him climbing out

I feel suffocated

I’m confused. You say you work weekends but also that DH works opposite days and isn’t around at the weekend.

If you are both working weekends I’m not surprised DS is frustrated and having meltdowns if you are trying to work whilst caring for him and DD at the same time. I don’t think it is feasible.

Some people use Snap or Sennies. Others have more success looking for a PA rather than childcare. You could ask special schools or universities if you can advertise there. Alternatively you could look at care agencies.

Have you had social care assessments?

If DD is younger Home Start may be able to support you.

Have you had a home OT assessment to look at making the home safer? And potentially looked at moving to a ground floor property?

It sounds tough. You are doing amazingly, but I know that's no consolation. Hope you get something sorted that makes life a bit easier.

Apologies I meant we were opposite days during the week. I'm off Mondays/Wednesdays/Fridays - those are the days DH works as well as the weekend. I work Tues/Thurs/Sat/Sun

@Relaxinghammock thank you, we will have a look into care agencies.
We haven't had an OT assessment. Ds was diagnosed around 3 months ago so we are still learning about what help is available to us. He hasn't had any social care assessments

Thanks for the suggestion regarding advertising at a special school/university

@coldcouture thank you so much x

Work opposite days*

Do ask for social care assessments. A carer’s assessment for you and an assessment via the disabled children’s team for DS. And a home OT assessment.

Does DS have an EHCP? Does DS attend school and DD nursery/school?

Are you in receipt of DLA for DS?

I really don’t think you and DH working every weekend is viable long term.

My work place won’t let you wfh without proof of child care, so I don’t think you are being fair to your children or your employer.
your child needs either a parent or a paid child care placement if you at work and family help is not an option

Yes I know, as mentioned before we used to work weekdays only and be off weekends which didn't work as DS would attend childminder's after school and they weren't able to keep him anymore due to behaviour. Since we been off weekdays he has been a lot better as we are there after school and have our routine in place

@isthewashingdryyet My workplace is aware I wfh with the kids as when I first joined, weekends there was barely any work for me to do after lunch time (dh leaves for work at 11am) that's why they were happy for me to wfh but now it's starting to get very busy. I'm going to have a look for a different job with more suitable hours

@Relaxinghammock thank you for the helpful advice regarding the assessments as we weren't aware. Ds has an EHCP, attends mainsteam and dd is in preschool

We downloaded the form for DLA on Friday so are in the process of filling it out

Call for a DLA form rather than downloading one. That way, as long as you return it on time, it is backdated to the date you called rather than the date they receive the form. The Cerebra guide is helpful when completing the form.

If DS and DD attend school and preschool, can you drop to working 3 days a week but stretched over 4 days including 2 shorter days on 2 of Monday/Wednesday/Friday?

Have you got a non-verbal, non-toilet trained school age child with autism, @isthewashingdryyet?

The balcony is a safety issue and the landlord is being unreasonable. Can the landlord legally refuse what you proposed? Are there any other safety options the landlord may consider letting you have?

I have seen ventilation panels to create a barrier when doors are open, but cannot find a link online. Would an extra tall stair gate enable you to keep the balcony door open?

What has that got to do with my comment ?
Colleagues have children with all sorts of diagnosis but the important question when you are employed by us is that you have childcare so you are not interrupted by caring for them when you are being paid by us to do your job.

it also applies to other caring responsibility, such as an elderly parent living with them, or even moving to care for a family member in their own home with say a broken leg or recovering from a hip replacement or other operation.

we have dependents leave which is unpaid for the days the other caregivers are unavailable

It possible explains your lack of empathy and prioritisation of your own wants and needs over OP and her disabled child?