Please can someone give me some advice as to whether I am in the right or wrong. It’s very long I’m sorry, but I’m struggling right now.
My husband and I have two autistic children under 6. The eldest has very difficult behaviour and has complex, high needs. He requires a 1-1 at all times, is non verbal and I can not take him out alone with his younger brother. I have in the past and this is actually very dangerous with him running away into roads, having to be restrained, whilst having a younger child with me. There has been awful times where I have left crying after taking them out together alone, I now don’t. My husband and I take them out together and that is still very difficult with meltdowns/running away etc.
My husband works full time and this includes Saturdays. Our son has high sensory seeking behaviour and if kept inside all day is jumping off the window sills, climbing furniture, out of control. So we have to take him out to meet those sensory seeking needs to the park, walks etc. But I can’t take him and his sibling alone, so we do this around his work. So we go out on Saturdays before work and Sunday day times when he is off.
My husband has single friends and likes to go out to meet them, that’s fine. I have lost friends as I am always looking after our autistic children who can not socialise with my friends children. I can’t go to the theme parks, zoos, events and farms with them in the summer holidays, it always went awful, I started saying no, they stopped asking and I don’t see them. That’s fine as my child’s needs do come first. I do go out rarely but I’d make it an evening so we can take the children out together in the day, go out with friends when they are in bed. My husband agreed and he goes out on weekdays evenings every couple of months or so. We also get a babysitter in the evening and go out together sometimes, never the day as we have to take them out together. He has been on two, weekend long stag dos this year which were important things to go to. So me and the children sat in all day and our son found it very hard having meltdowns jumping from the ceiling! I think he has a social life and I don’t keep him from doing stuff, he can go out and see friends weekday evenings. But Saturdays and Sundays are really taken up by our children who I literally can’t take out alone and have no one else to help me, and they also can’t be kept inside all day.
He came back from a weekday night out and said he is now giving me 8 weeks notice to go out all day and night on Saturday, that is enough notice and that’s what he doing. I said why a Saturday we take our son out that day, I can’t do that alone and it’s also the half term, which means a lot of difficult days in a row alone with both children which is really really hard and I really dread the holidays if I’m honest being out of routine and alone. 8 weeks notice is not going to change our sons needs. I said can he pick an evening I thought that is what we agreed, weekday evenings or Sunday evenings. He said he works 5 days a week and doesn’t get to go out, does repetitive stuff with us on his days off (I said that is because our son is autistic and can only do the same sort of things) it’s his routine, he said this is really controlling behaviour as I have all day everyday to go out and do whatever I want. He claims I can do whatever I want and meet whoever I want.
I have a toddler with me 24/7, house to clean and keep on top of, work part time, school run twice a day, hundreds of letters, forms, meetings, doctor appointments, speech therapy, OT, peads appointments, school meetings, for our son I’m so busy and overwhelmed by it all. I have absolutely no time for myself l, have lost friends as my children can’t join in with theirs or go to the same places, im so isolated, as I’m saying all this burst in to tears. I just don’t get why he can’t go out in the evenings and understand our sons needs and that at the moment it’s really really hard for all of us, I have made so many sacrifices, can’t apply for jobs and have a career in what I’m qualified in because of his working hours. So I work part time in a shop. So we all work around his work. He just says I can do whatever I want, whenever I want, he’s being controlled and I’m using our disabled son against him. I just really need help with looking after him and can’t manage him all day alone with his sibling and he is barely there in the week to help either, because of work. I said if he goes out all day and night Saturday we won’t be able to leave the house which is horrendous for our child, and there will be other days the same that week as it’s half term, half terms I really need all the help he can give possible so our son can leave the house and be able to meet his sensory needs. He agreed to ‘do as he is told’ and cancel the Saturday but who is in the wrong here.
sorry for the rant, but I’m really struggling with dealing with all this right now. I thought we were on the same page but clearly not. Please any options of parents with disabled children, thank you.