DH and I have three kids - 15, 14 and 11. My 14 year old and 11 year old are autistic and have adhd. Youngest has a medical issue as well. He’s non verbal and has learning difficulties. They both attend specialist schools and there’s no holiday clubs they can attend. We’ve approached social care but respite care only happens if you go through different support plans and then it’s one night a month at a facility. DH is the main breadwinner and I work four days a week. Really 5 days as my youngest gets home from school at 4pm as I lose an hour as I should work 9-5pm.
In the last 5 years I went back to work. I can only work remotely and term time only as there’s no access to childcare so for the bulk of the kids life I’ve been their carer. So jobs are limited and I can’t be picky.
But I’m finding the demands of work tough. It’s not managing the house but more my emotions and juggling work. The people at work are okay but there is still the expectation of producing good work and I’m feeling really disconnected from my work. I do all I need to but it takes a lot of mental energy.
My youngest child is very hard work, I’m frequently screamed at, hit, bitten and kicked. Everything is a battle from getting dressed (sensory issues), hygiene, getting them into the taxi to school and just general life as they have severe anxiety. I just don’t seem to have the resilience to bounce back as easily. I feel worn out, sad, tired. Our youngest was ill last week and couldn’t tell us and we only knew as he was more difficult than usual and then was sick. It was heartbreaking not to be able to help him and he couldn’t tell us he was unwell. I’ve spent the years isolated, picking my kids off the floor after a meltdown, trying to retain a normal ish life for my eldest and I spend most of the time walking on egg shells with my two kids with Sen.
I just feel so low on coping ability. I can’t seem to dredge up any. My DH helps and is great with the kids but has never been there main carer so doesn’t completely understand.