Managing Fibro with 2 young children, no money & Child protection services involved

Posted , 4 users are following.

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?

3 likes, 12 replies

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12 Replies

  • Posted

    Hi, It sounds as if you are having a hard time at the moment.   I don't know what sort of system you have in New Zealand, so I can't offer much help.

    Do you have any practical help, like a free day nursery place for your children to give you a break. The CYFS is something I don't know, but could you try and sit dwon with them and discuss all the problems you have with your life?  You said your husband has PTSD, ddi he get that from something that happened in the armed forces, if so you may be able to get help from a an armed forces charity that specializes in people with that sort of problem.  Hear we have something called 'Help the Heros' that offer all sorts of help to ex service personall with PTSD.  Or maybe a doctor who is looking after you could be talked to for assistance.  Our GP's can be good here,.but some are better than others.

    Sorry not to be able to say something more positive, but I don't know your countries health and wellbing services or volunteer organisation.  Hope you both get sorted out quickly.

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    • Posted

      Unfortunately I've tried sitting down with CYFS and explaining, but they just say they are hearing excuses and if I cant manage to do what they want then I'm an unfit parent and threaten to take away my kids.

      my husband has PTSD from the Christchurch earthquakes, in new zealand we have ACC (Acident Compensation Corporation) and publicly funded health care, however ACC is now refusing to cover PTSD from the earthquakes.

      Thanks though.

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    • Posted

      I'm terribly sorry you can't get any help for yourself and your husband.  Also, I assummed your husband had been in the forces as over here lots of men and women have ptsd from the wars in Iraq and Afganistan, although of course not just from that.  

      We have something called the Citizen's Advice, and they are all trained volunteers who help free of charge.  I don't suppose you have anything like that.  I'm sorry, I'don't know what to suggest, apart from a GP, but I don't know what your system is.  Hope someone, a another New Zealander perhaps, comes on who can offer advice about things in your country, someone with local knowledge.  Sorry, I wish I could help. xxxx

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  • Posted

    Unfortunately I've tried sitting down with CYFS and explaining, but they just say they are hearing excuses and if I cant manage to do what they want then I'm an unfit parent and threaten to take away my kids.

    my husband has PTSD from the Christchurch earthquakes, in new zealand we have ACC (Acident Compensation Corporation) and publicly funded health care, however ACC is now refusing to cover PTSD from the earthquakes.

    Thanks though.

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  • Posted

    Hi, what a difficult situation.  As an ex foster carer I know how the systems works in UK.    There must be budgets within the CYFS to fund daycare and over here there is a special fund that can be accessed by social workers to help keep children in their own homes.  We have something called Home Start which is a voluntary free help for families to help get them on track.  Seems like they are not making an effort to see what they can offer you to help you care for your children. Have they not considered a multi agency meeting which normally, over here at least, involves teachers,therapists, social workers and anyone else involved who could possibly help and have some input and/or opinion of what help is needed. Suggest you sit the CYFS down and ask them what they can offer you to help which does not involve taking the children. Social workers I have found love paperwork and have a complete breakdown of your income and outgoings so they can see what the situation is. Do you have an equivalent of our free Citizen Advice Bureau who can help you.  Worth a try if you have.  Good luck
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    • Posted

      The help CYFS have offered is parenting courses and help 'getting organised' through an external agency called anglican family care (AFC), all they did was come and check if the place was tidy and offer to print out organisers and planners for us.

      None of them seem to be able to understand that it's not a mental problem, we're not just dis-organised, it's that we physically can't keep up with the work.

      I am just starting up a business making custome body & bath products, and the AFC people suggested that perhaps this wasn't the time to do that if I can't keep the house spotless as well, nevermind that once it's making money I'll be able to get someone in to help with the things we struggle physically with and that we are getting further and further behind on our payments for things we could afford when my husband was working, that the insurance policies we had on them declined to pay out on, one because they don't cover mental health issues at all, and the other because don't cover pre-existing conditions, the doctor listed my husbands PTSD as a depressive episode on the forms for them and my husband has had depression in the past, the way I see it is they are saying "you've had a broken arm before, so this broken arm is a pre-existing condition"

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    • Posted

      trying to play devil's advocate here but to  lower stress levels and to keep the children at home  without interference from the CYFS would it not be possible to put the proposed business on hold for  while. I know you need the money but I also know the way these people think and they would be putting in their notes - she has energy for planning a new business but not for looking after the house.  You really are between a rock and a hard place whatever you do you are in a no win situation.   The authorities like it all their own way and the only way you are going to get them off your back is to compromise - give a little and then ask them what they propose to offer in way of help and assistance.  Many years of working with these departments taught me the art of compromise. Let them think they have control and are in the driving seat when really you are driving their decisions concerning help.Once the stress of dealing with them is out of the way you can concentrate fully on the business side. Only suggestions for you and I can't imagine the strain it is putting on you and your family. Surely your doctor can put in a word for you and your husband, or health visitor if you have such in NZ. They are the people in UK who look after children's health and wellbeing.Sorry I can't be of any more help but as a UK resident I am pretty limited in knowledge of NZ way of doing things.
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    • Posted

      I agree with Maggers. In my own experience it's best to do ONE THING at a time. Too many things on the go and something has to give! In your case, your health issues. Also the stress of being in debt makes your issues much worse too. Not sure where religious organisation (AFC) should be involved in your problem but..... NZ obviously do things differently to UK! Here we would claim any benefits we're allowed to and concentrate on getting well before starting a business. I repeat, try telling your story to an "Empathetic" local newspaper and try to get other people on your side if the Medics don't help! Insurance companies are notorious for not allowing claims which might mean a big payout! Do you have an ombudsman/woman to decide matters like this? I would defininately not leave things as they are with them. Argue and re claim, as many times as you have to and don't forget the papers!

       

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    • Posted

      We are claiming all the benefits we can but the benefit here was calculated in the 70's as 70% of what you need to live on, then they where cut back rather severly in the 90's, it has only ever been increased to 'match' inflation, as calculated by the CPI, which means an extra 70cents or so a week increase each year.

      even without our debts, we still wouldn't be able to afford to pay all our bills. Three of our debts are with debt collectors and being paid at $10 a week each and two more are almost at that stage. We HAVE to get more money into the house, we both got turned down for the supported living benefit (which pays more as it's for people who have a long term condition or disability that prevents them working) and disability allowances are calculated based on what you spent over the last 12 months, my husband hasn't been able to afford to visit the doctors as often as he should and my fibro has just been diagnosed so we don't have 12 months of medical cost for them to grant it on, currently we get about $2 a week between us to cover the extra cost associated with our conditions, that just covers the petrol to get to a doctors visit, doctors visits are $36 for a 15 minute consult, and must be paid on the day. with me having to see the doctor nearly every week at the moment to try and get my meds sorted, $2 a week feels like a slap in the face.

      I get what your saying about waiting on the business, but we just can't afford to.

      My husband & I being pagan we didn't particulaly want to work with a christian based organisation we raised our concerns with that when they where offered, 3 agencies where offered, Anglican Family care, presbetarian support services and catholic social services, there are no secular support agencies apparently, so we agreed to work with AFC to try to work with CYFS however they have been involved for almost a year now and will be at least untill november and no garuntee they will get out of our life after that either.

      Unfortunatly CYFS have a ton of power over here, and the papers won't touch stories involving them unless it's a case of CYFS obviously in the right. I looked into it around the 6 month mark. all the media in NZ pretty much prints what the government wants, we don't really have a truely impartial media.

      Oh and about giving information to the CYFS worker, I asked her to research FIbro and she said she didn't have time, so I asked her if I gave her the info if she'd read it and she said maybe eventually, but probably not.

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    • Posted

      Well "Catch 22"! or "Devil and the deep blue sea!  Try printing off your letters and these replies and showing them to your Doc. He needs to know that all this is driving you mad then they will have to admit you to a hospital and it would cost even more to your government.

      Sorry I can't be more helpful but know nothing about NZ or the politics of your country. Hope you get the help you need.

       Best Wishes, Ellie X

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  • Posted

    Hi. My sister lives in Oz. She does get some help for her daughters disability through their social/welfare services system. Do you have Social Services in NZ? I can only suggest you see your GP's. Try phoning the surgery for an appointment re your particular famiuly problems. They may be able to point you in the right direction for Welfare assistance and a social worker to help you sort this out. You need to get your Doctors on your side. If you see them about your health issues on a regular basis they could possibly write a letter for you both to present to CYFS! Explain what's happening to them, the Docs I mean. I think your surgery will be the first port of call to get the ball rolling for assistance. Hope you get the help you need. Please keep in touch on this website, we are all on your side! If all else fails try contacting your local newspaper with your story! It works wonders here in UK! XXX

     

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  • Posted

    Do you have an advocacy service in NZ. These people are really useful as they act as an intermediary between the local authorities and the parents. they will be impartial and just act as go between to put the points across without any emotions getting in the way.  May be worth exploring this course as a way forward.
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