What do you do when you're ill and have no support?

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If you are unwell, and your children want to go out and do things but you are too unwell to take them (and they have little empathy because they are on the spectrum!) and you are unable to take them, what do you do?

My girls don't want to be looked after by anyone else, we don't have family support or any friends that can help. I hate it that they might be bored but like today I am very under the weather and don't feel up to it, so am unlikely to be able to take them anywhere. Do I just take the view that as long as they are safe and have their wellbeing needs met, it won't hurt them to face a little boredom?

It's really difficult because my 11yo is showing typical signs of wanting more independence but she has low awareness of danger, high niavety, is easily-led, thinks she's invincible, is not street-wise etc. etc. so even if she had a peer she wanted to go somewhere with I wouldn't be able to allow it (plus she has a high level of social misunderstanding in friendships so would get upset over the smallest thing because she frequently thinks people are being mean). She really is not responsible enough, she lives in a fantasy world a lot of the time. So she says "I want to go somewhere exciting" even though I've told her I am not feeling well.

I guess most people have friends or family to help. I have a friend locally who did look after them when I had my AS assessment, we had been to her place many times as a family and they know her. However she had never looked after them alone, and when I arrived to collect them they were hysterical because of a variety of things that had upset them, including that they started arguing and screaming (both on the spectrum so inevitable) and she told them sternly to sit down and behave and they were not just upset by it, but distraught and said they never wanted to see her again. My 11yo was sobbing uncontrollably for ages afterwards for a long time (such a level of upset is rare for her) and I felt so guilty for leaving them with someone else. This would be the only friend that could look after them and it was a disaster so unlikely to be repeated. I understand them because I'm on the spectrum myself, and unless someone knows AS & HFA inside out or has it themselves they won't "get" the girls at all (even my husband doesn't).

In a few days, I have to leave them with a new childminder to go to an important health appointment that I can't bring them with me for, the first time they have ever been left with a childminder. They have met her once to be introduced and they hate her and my youngest was saying she will kill herself if she has to be looked after by her and begging me to come to my appointment with me. They said they will stay in their bedrooms and not interact with her and they don't want her coming into their bedrooms or touching their things (OCD issues).

It's a nightmare.

It mind sound weird, but isnt that sufficient? The kids can play in their room and you know that they are safe, and the keeper simply stays in the house to prove that the kids dont leave their home area or rooms and in case for emergencies? If the kids are able to spend their times with themselves, and dont want anyone to be involved for them, simply tell the keeper to take some reading stuff with him.

I am kind of in your boat. The only reliable person we know who can look after my son, who is 4 and who I suspect has ADHD, is an elderly aunt. She can handle him in small doses but she's not even able to figure out how to buckle his car seat, so we don;t impose on her unless it's a dire emergency. We only have 1 car and when I'm at home Dad's at work and vice-versa, so he's used to hanging around the house, but he is very needy of attention and company and doesn't like to play on his own.

That might be just about OK (although I am sure there will be fall out from it when I return), but what about my initial question, when you are at home with them and are unwell and they pester to go somewhere and do something and you are unable?

At least my two have each other to play with (when they are not arguing or my 8yo isn't indulging her reading special interest!) but I'm really conscious of not entertaining them enough and them being stuck in the house if I am unwell. I feel it's being a crap parent not being up to taking them out (we do go out although perhaps they might like more) on the occasions that I am under the weather, and because I don't have any options for someone else to take them out (we do have a contact with daughters we know locally but when I've suggested I call her to see if she would at least take my eldest with her and her own girls somewhere, my daughter doesn't want that) I worry I am restricting them.

I don't know why I worry about it so much because we rarely got taken anywhere when I was little, but then we had a large green outside our house and I played out with the nextdoor neighbours and my NT siblings. Here, we have a fairly busy road and they don't have friends here, plus with their ASC issues they aren't OK to play alone out of my sight.

We have a back garden with a big trampoline, climbing frame/slide, see-saw and swing and they never want to go out there. My eldest has got very conscious since she was out there alone once and our pervy neighbour was staring at her, motionless, for some time from his bedroom window, so that made her even more reluctant.

Sorry to hear you are struggling with your own health.

All any parent can do is their best, and once you've done that, you let go of all the could have, would have, should haves. In most cases, kids will adjust. You can do your best to make home as stimulating an environment as possible, and then let go of the fact that there are cool things elsewhere you are missing.

What percentage of the time would you say this is, that you feel too ill to get them places?

Thankfully it's not all the time! I have a UTI at the moment which is threatening to turn into a kidney infection, and the last few days I have been wiped out, just want to sleep all the time and feel dizzy and sick. I have OTC stuff for it and my husband has picked up cranberry capsules today for me, obviously if it goes on I will go to the GP but am trying to manage it myself at the moment as I hate going to the GP.

Last August I had the mother of all vertigo attacks which was brought on by stress, it's 9 months later and I still have traces of it, despite about 3-4 courses of medication. I'm not ill all the time, but you know when you are hovering on getting ill because you never get a break and despite taking all sorts of vitamins and supplements I have several things going on at the moment which will keep me stressed until they are resolved.

The good thing is that they are both able to play independently and are happy to do so (one benefit of being Aspie!) and they do also play together when they choose to. Luckily they both share the same special interest which gives them lots of fun together.

I just constantly berate myself for not doing enough. They are on half-term holiday at the moment so I feel I should be taking them to theme parks or whatever but I can't manage it.

I know everyone has off days, but I always imagine everyone else also has lots of family and friends support to take the children off their hands when they need a break and the children need something different to do, which I don't, and it just adds to the guilt.

For very rough days, or short illnesses like a UTI or the flu, there is nothing wrong with plopping them in front of the TV, DVD movie, or computer screen for a day or two while you recover. You don't want to do it so much that it becomes a bad habit or a screen addiction, but every now and then is not going to be harmful.

If you can afford to hire a babysitter on a regular basis, it might be worth finding someone with ASD experience who can get to know your girls and build a relationship over time so that you do have someone you can call for an emergency.

There's also a lot of value to just letting them play independently, and a bit of boredom is not a bad thing either. It gives them a chance to learn that life is not endlessly entertaining, and how to handle that.

Thank you Zette.

At 8 & 11, it's ok to just say no sometimes.

We aren't doing them any favors by keeping them entertained all the time. I am guilty of this and regret it. It's fine to say, "I don't feel well, we're not going out." As a matter of fact, its ok to say that when you're well, but just don't feel like going. I tell my son after 9:00PM that I am off duty. If he wants mother attention, he better ask for it early, because after 9:00, I am not at his beck and call.