How to manage alone with a disabled child and a baby

[Peony9876]

Just wondering if anyone has any tips or can provide any moral support for managing alone. I am feeling very sorry for myself at the moment because my DH who is normally really helpful is going to have to work abroad for the next few months and due to covid it is unlikely he will be able to travel back for weekends or even at Christmas. My family lives 200 miles away and will not see us due to covid so it is likely I will have to spend Christmas alone. None of my friends are local either.

My son has severe autism and although he goes to a special school during the week I will have to manage in the school holidays and weekends. He also frequently wakes during the night. My 10 month old is pretty good but very active and into everything. The combination of both children makes getting out of the house very difficult if not impossible as my autistic son is inclined to run off and is hard to chase after with the baby. He also gets very anxious when the baby cries which makes it very hard to do anything with both of them. I am feeling pretty depressed as I can see myself confined to the house for months on end with no adults to talk to. I can look at getting some childcare help but it is still likely I will have to do the majority on my own.

I am probably just being pathetic as lone parents do this all the time but I am just fearful how I will cope. Any moral support would be appreciated.

How old is DS? Could you ask around regarding babysitters/daytime nannies for children with SN that you could hire temporarily?

Hey OP!

Always keep a full packed baby bag ready the night before. This took a lot of stress out for me the following day.

Think about where you can go in the holidays. Do you have big parks/fields, where he could get space but you can still keep an eye on him? What excites your son, whats his favourite things to do to keep him in the zone rather than going off? Can you incorporate this when you go out? Sometimes I had to rely on an ipad or some gadget but it got me through the hard parts.

Are there any autism charities around locally? Some offer holiday events so you'll have some respite or fellow support.It might be worth looking up local area facebook groups and asking for signposting to something like this, and meeting people who understand.

Would you be able to get direct payments to help with your older child? I teach in a special school and we support parents to fill in the paperwork for this

He is 9. I have looked but the hours I need are proving quite tricky for people, weekends and school holidays.

@Chachacha90 Covid seems to have meant that respite services have stopped where we are. The problem is that the things he likes are quite tricky for us to do in this era of social distancing. He loves trains but is very sensory seeking and will want to touch everything so I am fearful of taking him on one at the moment. He would also not wear a mask.

@shieldingending It is not so much the payments that are the problem but finding people to care for him and places for him to go.

Can the baby go to a nursery?

Hey, you sound quite similar to me!
I have a severely autistic son too and now a 2 year old and 5 month old.
My son is also difficult to take out. My partner used to work away but did come home at weekends so that was a big help. It sounds tough not having your family close I’m lucky that I did have family support. Could any of your family maybe spend a week with you during holidays to help out?
Have you looked into direct payments? Some teachers from my sons school actually take on the extra work at weekends.
It’s really tough but when I had my 2nd son I had the fear of what have I done how will I cope alone but honestly you just find a way how to sometimes and it wasn’t as bad as I was expecting

I understand that recruiting people is hard... would any TA's from his special school be interested? At my school quite a few supplement their income by doing direct payment work. I understand that finding places to go must be hard at the moment though

I have two autistic children and a newborn (2months) so I get completely where you are coming from. I’d find coping without my partner long term really hard but my husband had been super busy with work recently and when not working has been completing a refurb of the nursery which has meant I’ve had less support from him than is optimal. What is helping / has helped me is:

1. Using a sling especially when out and about as it means my hands are freer to stop DS2 running off. Also my baby cries very little in a sling so that helps DS2 (he doesn’t like the crying either). If you use a baby Bjorn type carrier you can even discretely feed the baby on the go although it takes a bit of a knack and some babies don’t like it.
2. screen time is your friend - of course we feel guilty about over using it but in times of crisis it can be a lifesaver and your baby being small and intense in terms of need forever so it can be a short term solution when you need to keep your son entertained for half an hour.
3. meal wise keep things really simple - do online shopping and stock up on basics your son will eat. It’s horrible trying to get a child on the spectrum to eat outside their comfort zone unexpectedly so make sure you have loads of their favorites in a freezer / cupboard. It’s absolutely no fun having to hot foot it to the supermarket unexpectedly with baby and boy in tow when you realise you have no life sausages and that’s all they will eat. If DS eats the same three meals everyday that’s ok! Uber eats is also your friend if you live in a city
4. using a laundry service esp if like my boys you get a lot of regression wet pants and beds (common reaction after baby arrives).

Thanks all, it helps a bit to hear that I am not the only one in this situation and others manage.

I think I will look into direct payments. How do you get them? Do you need social services to be involved? My son has an ehcp and gets higher level dla for care, lower for mobility but we have never had any contact with social services. Are they means tested and what can you use them for?

I think it is the prospect of Christmas alone which is depressing me. My parents say they will only see us if we isolate for 2 weeks first which would mean pulling my disabled son out of school a week early. I guess if I did this it might be easier to find childcare that week than Christmas week though. TAs at my sons school are not really an option for childcare as the school is an hours drive away, he currently gets a taxi there.

You do need a social services assessment for direct payments in my area, at our school we talk parents through the process. Can you approach them for support with this?