@Goodtogossip have you ever heard the phrase don't pour from an empty cup?
I bet you get to replenish your cup at least once a day. I bet more often than not you sleep through the night. I bet you get to have a shower without worrying of the dangers of leaving a child unsupervised for 5 minutes.
Our cups have holes in them.
We're lucky to get 4 hours of broken sleep or more than a 45min-1hr stint at a time. For years.
My doctor has serious concerns that I might develop psychosis because of the hallucinations I have. Things like wood grain warping, the floor feeling like I'm on a ferry on rough season, hearing people shouting my name or hearing crying whenever there's white noise like the shower running or the kettle boiling. They also feel like medication would be detrimental due to the side effects that can be sedating, when I need to be alert all of the time, or enhanced feelings of suicidal ideation because it must be at least a weekly thought that I'd do anything to end the suffering of feeling so tired all of the time. Can't have caffeine because I've damaged my bladder from withholding which happens when DS is too dysregulated for hours and I can't leave his side not even to wee, and caffeine stimulates my bladder so I wet myself so I can't even have that to perk me up a bit. I'm so sluggish, but I've got to stay alert.
Caring for a disabled child has given me disabilities.
I've recently been diagnosed with PTSD, because I am in constant stress. I have depression and anxiety.
My son is technically at school full time, but since the start of term I can count on one hand how many times we've made it there on time, meanwhile for the second time the LA have declined a specialist provision placement. They've not even increased funding for him at the school he's currently in. He hates it. It fills him with dread. He's made no academic progress. He is othered by the children there who don't know how to interact with him because he is different. He's lonely.
No wrap around care wants him. No school holiday clubs can accomodate him. He couldn't cope with them any way as they're too unfamiliar and would cause him to have meltdowns when things changed.
I'd say he spends anywhere from 3 to 4 and a half hours at school every day. In that time, I eat, I sleep, I shower.
I've tried to ask employers to be flexible and I've said I promise I'll work the rest of my shift back when he's asleep, but it's not a promise I can keep because he doesn't go to sleep at the same time every night. Sometimes he'll not go to sleep at all, and he'll end up missing school because of it.
So if, 7 days a week, I can't shower when there's nobody else around to watch him, and there rarely is, and I can't sleep at night for more than 4 hours, although most of the time a lot less, and I can't eat because when I'm awake I'm playing catch up with housework, getting him coregulated, getting him dressed, getting him to school, picking him up from school -early most of the time too, when am I supposed to work? What job do you genuinely think I can do? They'd have to also be able to accomodate me and my disabilities that I've sustained since having a disabled child and because of my disabled child.
Do you think most parents of non disabled children get more than 4 hours sleep a night, every night? I do. Do you think they get to eat at mealtimes? I do. Do you think they can shower without worrying about their child eloping? I do. Do you think they worry about the damage their children throwing their heads back so hard it bleeds or causes a significant amount of damage when your back is turned? No I don't.
Stop comparing SEN parents to non SEN parents. It's not even remotely the same.
We can't sustain work because we're at our physical capacity. If you can't understand that then you're ignorant.