Being a parent is tough but being a parent carer is on another level. I think it's fair to say that most of the parent/carers I know don't work. Just like regular parents most of our kids go to school between (B is out from 8-4 including transport) but having a special needs child is like having a toddler... all the time. The level of care that goes into living with B and keeping her safe isn't far beyond that of living with S who is 19 months.
Fatigue is a big issue for parent/carers, we're up in the night, early, late. We worry constantly about things that neurotypical parents don't even consider. Paul works for himself now after quitting his full time job to help support me (and do something he actually loves) and I run a children's charity which thankfully means I can work when I need to. Other parents aren't so lucky, and either have to struggle trying to work while exhausted or just can't. That's without mentioning the appointments! This week we have 5 appointments at B's school... 5! Two on the same day at 10am and 6pm (the latter will probably be missed.) Last week we were at wheelchair services and week after is also L's SEN review at his school...
Its like spinning plates and I just don't know how we're expected to do it and work. Well we're not, we're classed as carers because we look after our children for more than 35 hours a week. For this we get "paid" £66.14 a week, so £1.89 an hour. Awesome thanks.
Today I sat and listened to Bella's teachers praise her character and progress but also list the issues she has. Her restrictions, barriers, behaviours for want of better words and the word residential was floated. Both Paul and I clammed up, no no no that's not what we want. It might be a real consideration for the future but not today or tomorrow. It might be tough, frustrating and badly paid but we obviously wouldn't change any of it.... Apart from the pay, we'd change that.