Assumptions and having my say as a parent and a carer

IMAG2139This past week has been quite tough, for numerous reasons, it’s been the worst week I’ve had in quite a while if I’m honest.

What hasn’t really helped  is the irritation I’ve been harbouring, on top of all that’s been going on I’ve had peoples assumptions about my life thrust at me on a daily basis.
I can only guess that people feel they can say this stuff to me because they think I’m unlikely to respond and they’re quite right, mostly, mostly I’m far to busy to hang around and discuss what it is that has just been said. The thing is though and it probably comes as news to some I’m suspecting, who must think I have a swinging brick where my heart should be, is that sometimes peoples assumptions really hurt my feelings. When you see someone whose down what kind of a person does it make you when you decide that that’s the time to kick them? OK, so this probably isn’t always purposeful and much of it may be just ignorance and thoughtlessness but either way my tolerance levels have reached an all time low of late.

These are the assumptions that get flippantly thrown at me day in and day out and that I’d very much like the chance to answer.

So I’m putting a few things straight, things I never get the time to say in person but that here on my blog I get to say and at least here I have a voice.

Below, for cathartic purposes I’ve listed the assumptions and answered with the truths.

Assumption, having a child with a disability means that my other children probably lack attention & that the older children get left caring for the little ones and have to do lots around the house.

Truth, I do have some help with caring for my eldest daughter from a carer (I employ Paige’s granny), and I do have occasional respite weekends which affords me time with my other children. I’m married so when my husband is home he is there for the children too. If I didn’t receive the care package that I do, then yes, I do think my other children would feel I’m not available to them enough, as Paige does require a lot of care given she is bed bound and totally reliant on another for almost everything. She can’t even move enough to re position herself in bed so she does require constant care. When I don’t have a carer here to assist then I have to put Paige’s needs first. This of course can be more or less demanding given Paige’s health on any given day. Paige needs and deserves attention in her own right too, every bit as much as the others. Often when I’m doing care at least one of the other children is there in the room with me, chatting to me or Paige or doing their reading and yes I can pay attention. I am quite capable of doing whilst listening. If social services were to reduce or remove my care package which could actually happen as we enter transition (her moving to adult care & given the fact she will remain living in her family home) then I do know this would impact the others and myself as caring for Paige 24/7 is physically and mentally tiring. Social services aren’t there to care about us as a family though, despite what people say and think. They are purely there to see that Paige’s care needs are met adequately. The system does not care for the carer, if I go down I’ll be replaced by agency carers. That’s just fact. No one cares to listen when I speak about what Paige might like and not like. They run their own assessments and they decide, because honestly, what do I know :-(

As for the children looking after one and other and doing lots of chores, maybe that would be nice sometimes but it’s not the reality. They may on occasion do some pots, or bring the laundry down, that’s the extent of it. Also occasionally the teenager might tuck the 5 year old in but only because the 5 year old loves her big sister reading to her sometimes. On occasion they might get asked to do more some days than others but no more so than in other households. I’ve done all I can to see their childhood be as unaffected as possible and I have had to beg for care hours in order to help this.

Assumption, that having 6 children it’s probably chaos in our house and bedtime must be horrendous.

Truth, the house is busy sometimes, sometimes the 5 and 3 year old tear around the place a bit more than I’d like, pretty sure this happens in other households too though. Bedtime is a finely honed routine and Ben and Summer still have bedtime stories. There’s no fuss around bedtimes.

Assumption, that if I do something outside of the home, like chair my charity then I’m not making my children my priority, especially my children with disabilities.

Truth, I do like to do something outside of being a mum and parent carer, it gives me a small sense of achievement, on a personal fulfillment level. I do 90% of this when the children are in bed, so it has little impact on the children. 2 or 3 days of every month it requires me to do work during day time hours. I think it’s no bad thing that the children seeing me doing something else anyway, it’s life. Mum’s aren’t just Mum’s, we’re people in our own rights too.

Assumption, that if I don’t do anything besides care for my children I’m actually a bit lazy and must have a lot of free time sat around living on benefits (my husband works full time).

Truth, although I don’t do paid work I do not sit around all day sponging of the state, my days are very busy, we don’t exist on benefits, my husband works full time. My daughter who has a severe disability doesn’t go to school or respite during the day, she is home with me and requires care. I don’t have from 9am til 3pm in which to please myself in, there’s usually at least one appointment a week(normally more) too.

Assumption, that because I’m home all day I should always be free and available for people to pop round for coffee.

Truth, having people round for coffee, to our house isn’t always an enjoyable experience, I whizz round doing housework before hand, I have to get Paige settled (and pray her bowels don’t explode while someone’s here sorry if that’s TMI but it’s the truth). I only hear half of what someone says to me as I’m in and out of Paige’s room. I’m making hot drinks for another person when actually I’d like one made for me.  People rarely just stay an hour, they stay 2 or 4 and I’ve things I need to get done because otherwise I’ll have to catch up later.

Now sometimes I like having people round for coffee, don’t get me wrong, sometimes I long for a chat and I do enjoy peoples company, it’s just I don’t like it assumed that because I’m in all day everyday that I’m available. A lot of the time I’m just plain to tired and it is hard when Paige is shouting me every 5 minutes (she does this when another adult is here, it’s an attention thing if she thinks I’m socializing). I’ve had people use my house like a free coffee shop come creche too in the past and I’ve ended those friendships. They’d even feed their children at my house and say they were glad they weren’t at home because at least their house was staying tidy and that they liked to be out of their own house, that way it stays mess free…unlike mine :-(

I’d love to be invited to other’s houses for a change or to meet somewhere for coffee occasionally. Thankfully I now have a good friend who also has a child with a disability and understands, I’ve even been to her house and out with her :-)

Assumption, that because I have 6 children my house should be unclean and messy.

Truth, my house sometimes isn’t the cleanest, or the tidiest but it’s always kept to a standard, as are the children’s rooms, in fact compared to a few I’ve seen they’re actually pretty tidy.

Assumption, that because I’m home all day my house should be spotless.

Truth, My house isn’t spotless because 8 of us live in it, some are small and we have a dog and lead busy lives. I don’t get a day in which my only focus is to clean the house, I’ve several things to do each day.

Assumption, that if one of my children looks down or misbehaves that it must be something to do with what is going on at home with me ,their sister or brother.

Truth, this has yet to be the case because we communicate openly. My son was quiet at school recently, out of character…it was due to someone on his table at school being unkind to him everyday. My daughter looked sad at the bus stop some mornings…she’s 14, it’s very early in the morning and the weathers awful. My youngest daughter was quiet at school, was it because I was having a meeting about Paige, no, it was because she thought there might be a monster in a school show she was going to watch.

The important thing being my children are still children in their own rights, they’re not just siblings to children with disabilities. Things outside of the home, external factors have every bit as much potential to upset them as things at home.I do appreciate our home circumstances being kept in mind but I just wish it wasn’t the default setting for the suspected cause sometimes.

Assumption, that because my child has a severe disability I must have nurses in and care in everyday and if I do have a carer in then technically I’m not looking after, caring for my daughter as I’m leaving it to others and shirking my responsibilities.

Truth, when you care for someone you are the carer, there is no magical team of helpers come in, unless your loved one needs to be seen by a visiting nurse or doctor or is on a ventilator etc. You may qualify for Direct Payments to employ someone else to help you care. This however will be limited. I asked for Direct Payments and while some may see this as me not managing my own daughters care myself this is simply not the case. I asked for and accept the help because sometimes Paige is a 2 person job, it also affords me the opportunity to sometimes just be my daughter’s Mum rather than her carer, for the other children, it allows me the luxury of being able to leave the house with them sometimes. To take them to and from school and means I can manage my time so that I do have time for them. Also it gives me a much needed break from caring to ensure I don’t reach breaking point. Seriously, if you begrudge a parent carer or carer respite and assistance then you’re wrong and it certainly isn’t in the best interests of the person being cared for. I feel strongly about this because some people very much begrudge parent carers having help because they see us just as parents doing what parents should do, not as carers.

Assumption, that eventually my daughter will go and live in residential and I’ll be able to work and take holidays like the majority of people.

Truth, I’ve made the decision to NOT put my daughter in to residential, she doesn’t want to go and neither does she wish to live independently, she is mentally around 5 to 7 years and has no desire to live with anyone other than Mummy and Daddy no matter how nice someone else is or the environment. This means (until such time I’m no longer able) I will always be her carer and as such will never be able to leave my house either with out arranging care cover or taking her with me. That I won’t ever be able to do anything spontaneous at any stage in my life and holidays and breaks away will be very very limited no matter what stage of life I reach. I’m not complaining, just stating fact. Please don’t criticize me for this, I don’t criticize those that decide to place their loved ones in to care. As parent carers we all only do our best and what we feel is best for our loved ones and us as individuals and we all pay different prices for the choices we make. I love my daughter just as much as any parent ever loves their child and to be frank I’m just grateful she has lived this long. Even if my care package is removed, as long as she is still here then I’ll be OK.

Assumption, that because I’m not going anywhere each day I’ve no need to take an interest in how I look.

Truth, actually someone once said to me ‘ you’d only be wasting your money on clothes if you got out each week and you don’t need them, you don’t go anywhere. A few pairs of jeans and a couple of tops would see you right’ Please don’t dehumanize carers like this.

Assumption, that somehow I’m stronger and a better and more organized person than others.

Truth, simply not true, I’m just a fallible human being. I’m not better or more able than anyone to cope. Paige wasn’t ‘given’ to me because I’m strong, I am strong because I have Paige and it’s my only choice.

Assumption, that the kids probably live on jumbo sized bag of crisps and yogurts.

Truth, the children eat very well , very very little comes from the freezer, we buy good meat (that I often slow cook), they have vegetables with almost every meal and have good appetites. They start the day with good breakfasts too, usually porridge or scrambled eggs is their preferred choice. I don’t go nuts on healthy school lunch boxes I’ll be honest because I know their diet is balanced on a whole. A packet of crisps some lunchtimes isn’t a sin to me when otherwise they eat very healthily.

Assumption, that my children possibly don’t or won’t do well academically because I’ve to much on my plate to keep track of their school work.

Truth, In actual fact, my children are doing well academically, one is a prefect and in top sets for everything. Another is taking his 11+ and above national average in every subject but P.E & art. My little girl who is only 5 is also doing very well. My son who has learning difficulties is even doing very well despite his diagnosis. Homework is checked and always done and my husband and I are both on hand when it comes to homework.

Assumption, must be great getting a free/motability car?

Truth, it’s not free, it is deducted from Paige’s DLA. I paid just over £2,000 for a small WAV recently (that we don’t get to keep). It is for Paige’s use only, so only to be driven if transporting her to and from somewhere or to collect her medications. My husband can’t use it to get to and from work and we can’t take the other kids out in it so we have to have a second car. Motability is a very valued scheme though as it has enabled us to have a WAV for Paige.

Assumption, that I must feel so bogged down in children some days that I regret having so many and must be mad.

Truth, Never, in fact I feel sorry for those that think that because they clearly don’t know all that makes having a large family wonderful. In all honesty, I find bringing up the children that don’t have disabilities no problem. I enjoy it. There’s occasions when things might get difficult and one of them does something wrong or makes a bad decision but that’s growing up and learning. They wouldn’t be children otherwise. When these things happen we talk about them and deal with them, learn from them and move on. It’s such such a different ball game from bringing up a child that can’t walk, has serious health issues and is doubly incontinent. This gives you a whole different perspective I guess. I feel incredibly lucky to have 6 children and some days yes it is exhausting but we all have days we find exhausting whether we have 6 children or none and I could never imagine regretting having my large family.

And I’m done…

I haven’t written this blog post with the intention of sounding like I’m a great parent, I’m quite aware of my short commings but I just wanted to have my say. To get it of my chest, just today someone said to me ‘it must be all chicken nuggets and beans in your house with that many to feed isn’t it?’ Honestly I get so frustrated. Is it just me or do others get bombarded with this stuff? I know I’m fair game given I’ve 6 children, 2 with disabilities and I can’t work.

I try not to write to many venting posts… although I do feel a little better now :-)

If you stay tuned I think you’ve earned a very large coffee and ALL of the chocolate. Enjoy :-)

 

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4 thoughts on “Assumptions and having my say as a parent and a carer

  1. Well said! I only have five, and I get randomly stupid comments at times, but I can imagine when you get too many assumptions you need to set the record straight.

    Off for my chocolate fix :-) xx

  2. The audacity of other people to voice their assumptions astounds me. the ignorance of their assumptions astound me. The fact that you had to write justifying your life and your family astounds me. Well written though Jo. xxxx

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