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I've recently been diagnised with fibromyalgia but I've been trying to get doctors to figure out what it is since before I finished high school.
I live in Dunedin, New Zealand btw.
I have 2 girls aged 3 & 1 and my husband has PTSD, neither of us can work so we have very little money, and in addition we have CYFS (my countries version of child protection services) on our back because our house isn't clean enough and we don't have routines set up for the children.
B routines they mean at this time we do this, then at this time we do that, etc with no deviations allowed at all. Even if we didn't have health problems that make that impossible, thats not a parenting style I agree with anyway. They tell us that we need to work out a routine for the children that fits around the things we want to do to be 'child focused' and that what we where doing, allowing them to eat when they where hungry and sleep when they where tired, and organising the things we wanted to do around what worked for the children, is 'parent focused' and makes us bad parents.
They insist that our house must be spotless at all times, with nothing on the floor, and they will turn up unannounced to check if it's up to their standards, there have been instances of them watching our 3 yr old tiping out her dolls and accessories to play with as they arrived and 5 minutes later when she had gone on to play with something else telling us that the pile of dolls etc on the floor was unacceptable.
I simply can't manage, I can't keep the house spotless all the time and trying to is causing me to have a major flare every week or even twice a week. I can't afford to hire a cleaner to help and there seems to be no support available for us. From all I've read I need to reduce stress to try and prevent flares but I can't, CFYS will not go away, and they are taking the line that if I can't do what they expect me to then I'm not fit to be a parent and they'll take my kids away, I am at the stage of wishing I had an obvious physical disability instead, because at least then they wouldn't expect me to be able to do everything an able bodied person does, if I was in a wheel chair, or had a physical disability there is a ton of support available but because I 'don't look sick' and my ability to do things varries, sometimes by the day, they refuse to help, and just threaten to take my kids away when I'm having a flare and the house gets messy and the laundry piles up because I slept for 14 hours and couldn't be woken up for 3 days in a row (and still was exhausted when I woke up)
What frustrates me is there are children I know are being mistreated that are still with the parents that abuse them, parents who have a history of abuse and assult charges and they haven't had their kids taken away. Yet we who have major cronic health problems, get accused of not accessing the support they offer, but when we ask for the help we need get told that they don't offer that sort of help, then they force us to send our children away, they have twice done this, once they told us that if we didn't send our kids to stay with my husbands parents they would take them into foster care, nevermind that they live 5 hours away and my youngest is still breastfeeding. On that occasion my in laws refused to let my mother (who lives in the same city as them) see my oldest on her third birthday (they are jehovahs witnesses and don't celebrate birthdays), or at all, and refused to even speak with her to organise her to look after them while they went to their church, so they took my children to their church, when we had expressly said not to. They also abused my mother verbally over the phone everytime she tried to call them to arrange anything. CYFS then tried to make us send them away to them again a few months later, we refused to that time and my mother drove overnight to come and be here so the children could stay, my grandmother also drove 14 hours to come and support us. CYFS 'allowed' the children to stay with us that time as long as my mother or grandmother was there from the time the girls woke up to the time the went to bed.
They (CYFS) seem unable to understand why we can't just visit the doctors anytime we want because of finances, but when I offer to show them how tight our budget really is the refuse to look, saying 'we don't need to see that' they seem unable to grasp the concept that none of the alternative therapies that could help me are funded and I dont have the money to pay for them.
Because I can't work a regular job, to bring in some more money, I am trying to start my own business where I can set my own hours and if I need to take a break every 15 minutes I wont get fired, but everytime I say anything about it, or the house isn't spotless because I used my energy up working on the business instead of on housework they tell me that 'perhaps this isn't the time to do it' while also expecting me to somehow magically find the money for things we need but can't afford.
I don't really know what I'm asking here, maybe if anyone has any idea that could help? I think mostly I just need to know I'm not alone, is there anyone else in a similar situation out there?
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