Let's Take Care - Support for Carers of Disabled Children and Young Adults
Melissa and Jane have been caring for their daughters for over 20 years, helping them to lead hugely successful lives. But they've made some mistakes along the way, and learnt a lot. Or, learnt the hard way.
They've been tired, burnt out, broke, ignored, isolated - yet still expected to keep going.
Let's Take Care is their way of helping other carers of disabled children feel less alone - and more equipped to cope with the realities of care that no one talks about.
In each episode they'll talk about the emotional and mental weight of lifelong care - what it's like to fight the system constantly and how to survive practically, emotionally, physically.
They'll be sharing what they wish they knew 20 years ago ... and hoping to make you laugh as well.
Let's Take Care - Support for Carers of Disabled Children and Young Adults
Episode 4: What we hate about being carers (and it's not our kids!)
Being a carer for a young adult with profound disabilities is tough - but it's not our children that make it hard - they're a blessing. It's the system that puts carers under constant pressure.
In this episode Melissa and Jane share their greatest frustrations and discuss the many difficulties families face when they're caring for a child with disabilities.
This episode is a tongue-in-cheek glimpse at the worries caused by the seemingly never-ending bureaucracy that weighs them down.
As always, Melissa and Jane manage to look on the bright side as they rage against the machine.
Whether you're a carer or not, you can't fail to be touched by this insightful episode of Let's Take Care.
Plus...the two mums reveal details of a very special guest who's lined up for the next episode.
#ParentingADisabledChild #DisabilityParenting #SpecialNeedsParenting #CarerSupport #ParentCarers #CarerLife #TiredParentsClub #CaregiverSupport #ParentingJourney #InvisibleLoad
One thing I really don't like, oh, it makes my blood boil, is having to reapply for things. My child has a diagnosis. She is disabled. She was disabled from birth. Give us the damn blue badge forever, please. Why do I have to keep applying? Children will stare at Kitty, they're really crane their necks.
SPEAKER_02:I know that children are naturally curious, but you are a parent and your naturally curious kid is making my kid feel uncomfortable. Raising a child with profound disabilities can be extremely challenging, as well as medical, physical, and educational needs. Getting the help and support you're entitled to is frustrating and exhausting. I'm Jane Holmes.
SPEAKER_01:And I'm Melissa Paulin. We've been caring for our daughters for over 20 years, helping them to lead hugely successful lives despite the barriers faced living in a society where the needs of disabled people are often pushed down by the system that fails to meet their needs. We set up the charity building for the future, which has helped hundreds of families. As parents, we've made some mistakes along the way and learnt a lot.
SPEAKER_02:We've been tired, burnt out, broke, ignored, and isolated, yet understandably expected to keep going by a society unaware of our struggle. Our new podcast, Let's Take Care, is our way of helping other carers of disabled children feel less alone and more equipped to cope with the realities of care that nobody talks about. In each episode, we'll talk about the emotional and mental weight of lifelong care, what it's like to fight the service providers constantly, and how to survive practically, emotionally, and physically.
SPEAKER_01:We'll be sharing what we wish we had known 20 years ago, and we'll be hoping to make you laugh along the way as well. Let's take care, the new podcast brought to you by the charity Building for the Future. For families and carers of people with disabilities. There are things we go through that we never say out loud. The endless appointments, the sleepless nights that blur into months and years. The forms, the fightings, the feeling that everything, every single thing, is a battle we didn't choose. We smile when people say you're so strong, but most days we don't feel strong. We're tired, we feel invisible, and we feel like even if we stop for a second, that things might fall apart. This episode isn't about being inspirational, it's about being honest, about naming truths that we live underneath, that live underneath the love, the guilt, the grief, the resentment, the exhaustion, all those complicated feelings that we're told we shouldn't have. But we have them because we're human. And there are things we don't like about being parent carers. And we're going to talk about those today. I'm Melissa Paulin, and I'm here with my friend and colleague Jane Holmes. We're both parents of grown children with disabilities, and you're listening to Let's Take Care, the podcast for parent carers, where we remind each other that taking care of ourselves isn't selfish, it's essential. So let's have a bit of a moan, Jane. Go for it. What are the things that we don't like about we love our children. We don't have to say it, but let's just say it.
SPEAKER_02:Thank goodness we've got the children.
SPEAKER_01:We adore them and everything about them. But there are some things we don't like about our role as carers and the system that we're placed in, I guess. So we're going to talk about those today and hope that listeners out there tuning in will it will strike a chord with them. It's important to be honest, isn't it? It's important to be honest. And I think it helps with your mental health to occasionally say I don't want this today. I don't want to be this kind of parent today. I don't want these stresses today. Because it helps you address them and then hopefully you think about how how you can heal yourself a bit, you know, if you recognise that you're under strain and that this is just too much. So what are the things that we don't like?
SPEAKER_02:Well for me, um the biggest thing I I don't like is is the constant uh unnecessary fighting for everything. I mean absolutely everything. It's almost as though we're put through a test by service providers a lot of the time. How far can we push them until they break or just before they break? Yeah, it does it does feel like that. Um it feels like we're being sort of put through the paces in order to demonstrate our gratitude or or or we're made to beg. And yeah, we we live in a society in a country that has agreed to support disabled people, including disabled children, but nevertheless it is a constant battle to get to get what we need. And the bare minimum. I mean it's exhausting actually. Um it's not the children that have done that. It's the soci it's society, it's the service providers, it's the funding. Yeah.
SPEAKER_01:I think uh a lot of parents would agree with that one for sure. We are done fighting, so if anybody out there can make our lives easier, if you're in a position of power and you're listening in, just think about the parents at the end of the day. We have so much to deal with. Um I don't like the fact that our homes can sometimes feel like a hospital.
SPEAKER_02:Yeah, that's very true, especially in the beginning for us. Um when my daughter was first discharged from hospital, we came home with oxygen cylinders, suction catheters, suction machines, tubes, syringes. Big scary things. Big scary things. Um we lived in a tiny little house up in Durham at the time, um, which had a a tiny little dining room, and that basically became the equipment room, the room where we kept all her feeding equipment and you know, uh hospital issue things. Um, you know, the hospital issue breast breast pump was uh you know, this great big thing that you plugged in with a yellow piston on it that you sort of look like a Victorian torture machine. Oh gosh, you know, we've got to have all these things, it didn't feel didn't feel like home.
SPEAKER_01:So yeah, I I agree with that. I think um my daughter would agree as well because I'm when I think back now, maybe she picked up on my just dislike of having to get used to these big pieces of equipment and and routines and people in our home. But after a while she would refuse to wear her leg splints and wear her special boots. She just wanted to, you know, not accept them. And also things like her adapted chairs that would be issued by um, I think occupational therapy. She would refuse them. She lives on her own now and she'd probably say the same thing. But they're making furniture that looks a little bit more comfy now, and it blends in with the athlet with the aesthetics of you know regular living room interior. So she has got a new armchair that's really comfy, and in fact, everyone sits on it when they go around. So I think, yeah, it doesn't look like hospital grade, you know, um, issue. So things maybe there's some improvement there, but you know, we all have to have PPE around. So if you think back to people went through COVID, the general public got used to having some PPE around. And uh that must have been weird, but we've had to deal with that for such a long time, haven't we? The gloves and the aprons and the shoe covers and the hygiene routines and the you know immaculate recording of medication and all that kind of stuff. Yeah. It's it's a lot, it's a lot. And I I don't like it. I love my home to be cozy and mine and normal your personality touches and here, there, and everywhere. And it is really hard when you have this invasion of anything that's different. Um it's hard. I don't I don't like I don't like it.
SPEAKER_02:Our homes have got to feel like homes.
SPEAKER_01:Yeah.
SPEAKER_02:That's really, really important for all of our family.
SPEAKER_01:So let's talk about a biggie that is up there high on the list of things we don't like, and that is the staring. 2025. We are in 2025, and people still stare at us. At people with disabilities, and I just with all the awareness raising that so many charities like ours do, up and down the country. School of inclusion. School inclusion. You know, that helps a bit, but disability around. But people still stare.
SPEAKER_02:Why? Oh, I I you know, parents with small children, um, you know, the children will stare at at Kitty um and they're really crane their necks, and often the the parents just sort of s stand by and watch it. Well, I know that children are naturally curious, but you are a parent and your naturally curious kid is making my kid feel uncomfortable. So you could use that as a learning opportunity for them and say, Look, we don't stare. Um you know, if you want to go and say hello, then let's do that. That kind of thing. I've I've had a word with parents along those lines before. No, you know, no, no um uh disregard to the children themselves, but it's the parenting. I mean, I remember once we were in Sainsbury's um and this kid, I mean he must have he was probably about twelve, so definitely old enough to know better. Um, and he stared at Kitty so much that he was actually walking backwards because he just turned round, he could not take his eyes off her. No, he bumped into a pillar. We love that.
SPEAKER_01:Still happening, it's just happening. Yeah. One of the worst traits of human nature, I think, is uh kind of gorking. Gawping. I think that's it.
SPEAKER_02:I mean, having a look at someone who's a bit different is one thing. Explaining to children that they're different and why, can we have to say hello and would you mind if my son met your daughter? Because I think it's really important for him to learn. Oh, I would be overwhelmed with gratitude at that attitude. But it's why I made a poem there. But um it's the gorping, it's the senseless gorping that really is just you know as if they were an animal in the zoo. Do you ever get really angry?
SPEAKER_01:Because I do get incensed.
SPEAKER_02:I have son, yeah, certainly. You're just like, oh for goodness sake, can you shut your mouth at least? I know. I think I'd say, have you got a problem or something? I think it depends, and this leads me into something else actually, because I think it depends a lot on where you are that day in terms of tiredness or emotional overload, because we are running um near to capacity all the time. And you know, something happens and it it totally overwhelms you. I mean, I have a family member who very sadly was sectioned last week and is now in a mental health unit, and it has been totally and utterly overwhelming for me because I don't have the reserves in my battery to to to give that situation the time and energy that um I perhaps would have liked to. That's another thing I don't don't like, um, not having much battery life left to spare when things do crop up, when my parents died. Um I just you know, I went through the motions. I still I went to work, I organised the funeral, I was caring for my daughter, etc. etc. But I don't think I really did anything. I thought I was achieving things, but when I look back, I actually did nothing. I just thought, you know, I was just going through the motions. I didn't have any anything in me to to give, you know, to give extra um energy to, and that that really pisses me off actually as much as upsets me because I just think I just need you know, the society service providers have taken my energy away from a family member who really needs me right now. And that that that I hate. I hate that. I hate that I'm limited.
SPEAKER_01:Yeah.
SPEAKER_02:I hate that I'm human sometimes.
SPEAKER_01:That's something that I would agree with for sure. You're on all the time. You have to be switched on and turned up right to the max because you're you've got more appointments than anybody else. You've got to have more meetings than anybody else, you've got to have more strangers in your home all the time, so you have to perform, you've got to have your brain switched on, you know, and all your emotions as well. You know, therap taking your children to therapy, you've just got to be on, on, on, on, on. So yeah. You're right. When you're when you when you're asking yourself to, you know, you're calling on your reserves, where are they? You don't have any left because you've had to give it to them, 365.
SPEAKER_02:And sometimes you just want to be a parent, you want to be a mum and do the things that a mum would do, and caring gets in the way of that. Um and that brings constant guilt. Uh because you know, your child needs you to be a mum and needs you to to do the sort of things that mums do, but your energy is being taken up fighting service providers um on you know unnecessary caring duties. Um, and I say unnecessary because you know there should be more help.
SPEAKER_01:Guilt is a big thing, isn't it? I mean we could talk probably a whole show on guilt that you feel as a parent of a disabled child, for sure. Yeah. Just kind of linked into that last topic there. I don't like the fact that I have less to give other people, and I wish I did. Well that's it. I wish I could, you know, I wish I'm talking going back in time now. I wish I could have been there more for friends, neighbours.
SPEAKER_02:That's right, exactly.
SPEAKER_01:You know, uh my sister, my brother look after their kids a bit more, but I think that I didn't have enough in me, maybe. Or they didn't ask for help because they think she's there, she's coping with a lot, um, I won't ask her, you know. I feel just awful guilt. My my mum went away on holiday and didn't ask me to dog sit because I had young kids, I had pets of my own, I had a house to run and I work, and she left her dog with the dog sit, so the dog got hit by a car and was killed.
SPEAKER_03:Okay.
SPEAKER_01:And I just think, oh mum, I wish she'd have just asked me. I'd have made it work. You know, but people don't want to overload you because you're already overloaded. But also, I want to be asked, I want to be able to give, but I feel like I haven't been able to give enough to family and society, friends, whatever.
SPEAKER_02:But if society, if the service providers, you know, did what they are actually supposed to do, yeah, if society was more supportive, that would help an awful lot. And it's a actually quite a subtle shift. Um, but really worryingly, this week particularly, I've noticed that you know there seems to be quite a bit of anger directed at the disabled community. You know, there's absolute incorrect infactual stuff going out in the media. You know, all these disabled people getting free cars from motability, they're getting Mercedes, they can they can get a Mercedes if they have tennis elbow. It's absolute nonsense. No, so you know, the gutter press have been really having a field day and calling disabled people grifters because there's a charity that's got billions of pounds in the bank that takes away half your benefits that over five years adds to up to£20,000 to lease you a car that you can't keep and charge you about£8,000 plus on top because you need a bigger car because you've got a kid in a wheelchair, and yet disabled people are suddenly grifters. I mean it drives me absolutely insane that it's so unfair.
SPEAKER_01:That's a real big misconception. I haven't seen that in the media this week, but I'm gonna take a look now.
SPEAKER_02:Well, I d I read all the papers, I read all the all the political persuasions, and I do I read this this was something in the Daily Mail, may not surprise you, but I think it's important to see what what what people think. I I mean you I we need to know what the attitude of disability is, especially running a charity. And we need to know what people are saying. So it's really important to read a broad spectrum of of the media, actually, whether you agree with it or not is is actually not the point. So I do read everything, but I mean even across the board there are people commenting on press press coverage about the motibility scheme at the moment.
SPEAKER_01:The big story I saw in the press this week was um a mother getting sentenced to life in prison for killing her autistic son. Yeah. I don't know if you saw that that poor woman. You hear about this. She committed murder, but she was obviously mentally unwell and pushed right to the edge.
SPEAKER_02:I mean it's not it's not actually all that unusual that you hear about um a par a parent um taking the life of their disabled child and the and their own life at the same time. I get it. Because, you know, it's it's um it's not something I've ever, you know, even come close to. But, you know, if you were particularly if you're, you know, a single parent with a very highly disabled child, you don't have the time to fight for the things you need, your child isn't getting the things you need, you feel you can't provide, you feel you can't parent them properly, you don't see a future for them, the th the thought of life after you've died for them is unthinkable. I mean, I you know, I it it's it's not um it's not something that I don't kind of understand. Well I I you know it's it's tragic because a lot of people don't understand the gift that disabled children bring. But, you know, I can I can see how it happens that way.
SPEAKER_01:I think those parents will experience loneliness to a deep, deep level. There's a there's a different kind of loneliness. Total isolation.
SPEAKER_02:Total isolation.
SPEAKER_01:So what else don't we like? Lots and lots of things. We could be here all day.
SPEAKER_02:Link it links into what to what I've said before, but constantly chasing as well. I mean that takes so much time.
SPEAKER_01:Why do we have to do that? Oh, so much time.
SPEAKER_02:Do your job properly, people. I mean, talking about motorbility cars, yeah. I'm a bit of a hobby horse about this today. My daughter has a is a full-time wheelchair user, she can't transfer into a car seat, so she we have to have a wheelchair accessible vehicle, which means she goes in the back up a ramp and gets tied down while staying in her wheelchair. So we we need a big car also for quite a lot of equipment. You know, we can't go away overnight without taking a car full of stuff. And that car, we you know, the down payment of nearly£9,000, number one. Um, we had a test drive um for it back in November last year. And we were going away on a driving um trip in June, the following June. So I said to the guy, yes, we like the car, and we we would like to order it, signed on the dotted line, and I said, Well, as long as it's with us by June. And he went, Oh yeah, yeah, of course it will be. Oh yes, of course it will be. Well, we still haven't got it, and it's now the 18th of October, and it's actually coming in a couple of weeks. But I have been chasing that car for months and months and months and months and months. And it's just like, why do you, you know, don't tell us a lie, number one, and then you know, every time I ring, it's oh, it should be soon, should be soon. So I wrote, I'll come back, it should be soon, should be soon. Oh, it's taking a bit of time in the manufacturers, but should be through, you know, it's oh, just give me a break.
SPEAKER_01:We had that with a wheelchair. We bought a new manual wheelchair and it was like they fell off the face of the planet or they thought we had, and we had to chase them. Where is it? Where you know, we've given them money for this product. You you know, if you're buying a new coat or a new pair of shoes or a new bike or you can just go get it off the shelf. But for us, we have to find the money, raise the money, apply for money, get a grant, then go to a really lengthy measuring appointment, one or two, you know, um, try a piece of equipment out and then wait forever for this equipment to be ready, but then chase them. And then when we got there, they said it was ready after we'd chased them. The casters were wrong. Yeah.
SPEAKER_02:Well no consumer rights don't seem to apply to disabled people, do they? Yeah, because you have to have a wheelchair, it's quite a niche market. They can produce what they like to whatever standard they like, there's not much you can do about it. You can't say, right, I want my money back, I'm going elsewhere. work. Yeah, because there is no elsewhere.
SPEAKER_01:There's no else.
SPEAKER_02:Well I mean that's another thing, isn't it, that you know really needles me is is um these organisations that pr pr you know that manufacture disability equipment, accessible toys, etc. And they charge uh you know it's two, three times as much as as they cost in you know the average toy shop. I can remember looking through one particular catalogue trying to choose some toys for Kitty one Christmas and then seeing the exact same toy in Toys Are Us for you know fraction of the price. Yeah and you think you know I mean it's just it's it's mean isn't it? It's wicked actually but they they can get away with it because people look at those catalogues think, oh that's a disabil disabled child's toy. I won't be able to get that anywhere else but actually you can lose the time.
SPEAKER_01:But the minute you have something that you want to get replaced if we go back to equipment you find that it's obsolete or the they're not making it anymore. So the reason the reason why we had to get a whole new wheelchair is the on my on my daughter's previous chair the foot plate broke. Well apparently you can't get that part anymore.
SPEAKER_02:I mean that's just enough it's the same as the buggy I mean Kitty Kitty we go a lot we're walking a lot across the fields where we near where we live with the dog and Kitty's got this three wheeler buggy um sort of adult size three wheeler buggy and it's absolutely fantastic but it costs three and a half thousand pounds. Wow I know and um we we we got the money together got the buggy and it a a piece of the the metal sort of sheared off as we were going down a bit of a bank and we wrote to the the the company that supplied the buggy and said you know can we can we can you supply us with this little piece of piece of metal that we can just replace simple right no no you've got to buy a whole new buggy and that's a huge important part of her life is how she gets fresh air it's how she gets the sun on her face you know we get we can't we can't just shell out three and a half grand just like that. It's a whole now and a whole new process. Same with her tricycle and she has a tricycle so she does get out on that but that was I mean that was about seven thousand pounds.
SPEAKER_01:So if anyone's listening and they are entrepreneurial minded engineering minded yeah go out there now and buy lots of parts and have them in a van and then we can call you up. Yeah we need like an emergency service don't we like a number we can call to come out and fix parts and wheelchairs so we don't have to then go and raise thousands of pounds for the next item even if we even if we paid them you know half of what we pay the standard manufacturers they'd be making a really good living. Yeah somebody do it please going back to um not liking the fact that we have to chase endlessly everybody I mean I had to chase for our local authority to come up with a care plan uh and carers budget for for my daughter for twelve months. So for twelve months she was without a care team. And I know that's not uncommon no but what th this ties in this is another thing I don't like and it ties in with chasing. When you get a result you then have to say thank you. I don't like being grateful sometimes. Oh thank you for wasting 12 months of my life causing endless amounts of uh sleeplessness and stress and I've had to turn myself inside out to deal with my situation when I've asked you for help and I've been chasing you and now you give it to me. Thank you. Thank you so much that's made a huge difference to my life I don't like I don't like that I don't like being grateful. I wish we could be really angry and really say how we feel but we're in the system.
SPEAKER_02:We can't have to be I let it rip I let rip sometimes I can't help it. I think it's healthy honestly but you know and there are a lot of people that don't like me for it but tough.
SPEAKER_01:Good for you it's really healthy I don't I don't care anymore really I think it's probably good if people can't do that is to find somewhere or someone that you can bend to say I don't think you should keep your anger and your frustration in I really don't think it's healthy at all. No where does it go? It goes to a bad place and then ends up in all kinds you end up in all kinds of trouble. Absolutely agree. What else don't we like? There's a biggie there's one biggie that we haven't discussed and that's our fear of getting sick or dying and what on earth will happen to our kids. That is one thing that we can't we still can't resolve it's inevitable. It's part of our lives and it's looming and I just we both of us I know we I you agree we don't like it.
SPEAKER_02:We don't like this constant fear and and we were we're both in our fifties now and hopefully we've got you know a long time ahead but as we get older now we'll as we get older we're we're we're getting you know um we you know you lose strength you use resilience and that is a real a real worry um because and this leads into something else I dislike your disabled adult child leaves full-time education comes home goes to residential provision lives independently with care support and no matter what the setup is you are the one orchestrating their life anybody who thinks that their disabled young adult or disabled adult child can live away from them happily and fulfilled without you having to get involved on a daily basis is is deluding themselves. Either they're deluding themselves over what's involved or they're deluding them themselves over their young child young young adult child's level of fulfilment in life. I mean my daughter has two to one care during during the um day and waking nightcare overnight and I um my husband has still had to you know give up his career and go part-time because he's still supporting her he's still orchestrating her life you know she's now doing a degree he's the one that is is supporting her um to do that is this because and I agree with you every family situation is the same where there is someone who has to keep on top of everything yeah constantly no matter how how old your child is is this because social workers just there aren't any anymore because in the previously would social workers take on a lot of the worry the management the putting things into place whereas parents now have to push push push and then worry worry worry fight fight fight but also I think it's it's bunching people together so you know people think well if you're in a wheelchair and you're physically disabled therefore you can go into a residential home with other people who are physically disabled okay and then you look a bit further and you realise that those pe those people have got profound learning difficulties. So suddenly there's a prospect of your young adult child in my case who's got a brainstem injury but the frontal part of her brain is intact and she's actually a really bright girl living in a house or whatever with other people who have got profound learning difficulties and with staff who are probably trained to get things done and you know don't actually spend much time really giving them a a life you know that really scares me that one day and one day you know hopefully she will outlive me but frankly hopefully not by much. I mean that's that's something that's a reality isn't it very hard to say but it's the way society is she will get shoved into the nearest care home and it'll be like a hospital and she'll be um with people who who don't get her don't understand her won't be bothered to bother to communicate with her properly living with peer peers who aren't are anything but you know and and that day will come and it but until that day comes I'm gonna do everything I can to oversee her life and give her the best life possible while I can. Absolutely can you know living her her best life as they say these days.
SPEAKER_01:I think that's my biggest thing that that I don't dislike and that is anyone whether that's a medical professional, a teacher another parent underestimating my child.
SPEAKER_02:Oh yeah don't ever do that no at your peril.
SPEAKER_01:Yeah but I see it in a lot of other parents who have disabled kids they're happy with the norm. They're happy with them kind of just sitting there doing very little or repeating what they're doing instead of finding solutions and pushing them. I see that a lot I don't like it.
SPEAKER_02:Maximize their potential push them out there sometimes you do see that and I but then I think well they probably know their kid better than I do they definitely know their kid better than I do and maybe that's right for them, you know, but um the underestimating I mean I I I taught Kitty to read and write with with my mother-in-law actually after school when she was about six um when she was still at infant school and um then she went to a special needs uh a school for children with physical disabilities that didn't have a speech and language therapist let alone a specialist which is what she really needed had a communication teacher and this communication teacher just didn't get her at all. Kitty was much more severely disabled than most of the other kids that had been there in the past they were more severely disabled children are kind of coming through because of medical advancements so you know they were having to get used to a whole different cohort and I remember sitting in the annual review knowing that my daughter could read and write but also knowing that she's nonverbal and needs help with spelling out words. She needs someone to hold her arm still because she's athetoid and she can't you know she can't do anything really precisely on her own. But I knew you know we knew that um and her dad obviously also knew that and this communication teacher said well I don't think she knows the difference between yes and no and I was like oh my god and this was really it was really important that this woman understood who she was because she had a lot of input into the what was then the statement which then impacted her next school and you know we really wanted her to go to this particular secondary school it was crucial but you know with this woman's input who was not prepared to look beyond her very limited experience you know we ended up paying privately to bring a specialist speech and language therapist in to actually work with Kitty who immediately said yeah she's reads and writes and you know and was able to write a report and put that in the statement which then enabled her to go on to her next school. But I mean you know for goodness sake that process Yeah the default setting on that in that professional's mind is underest you know oh dear and and but people do I mean even even people who've known us for years speak to her in a really patronising tone. I mean when I spoke to Kitty and I said you know what is it that you don't like about about being disabled she said people other people I mean I mean that that's more of a problem to her than the fact that she is two-fed, non-verbal wheelchair user etc etc she finds that harder when people are patronising and that's something that could change really easily we're never going to get her walking or eating or talking but we can absolutely get other people not to be lazy it's laziness obviously they see to my they're frightened of having to spend a little bit more time listening to somebody and understanding them.
SPEAKER_01:Have you seen that Disney movie Out of My Mind I think it's called and the Oh I think I have actually the protagonist is a young woman in with cerebral palsy in a wheelchair. And she throughout the film she lists things she likes and doesn't like it's not it's a teen movie so it's you know lip gloss and boys and that kind of thing but she does talk about being disabled and and she says I don't like butts in my face you know because she's in a wheelchair and I thought I never thought of that. That would really really wind me up if I was in a chair and you constantly face with people's groins and thums.
SPEAKER_02:Well actually something similar to that I mean you know you're you're we're out and about and pushing Kitty in her wheelchair and also I'm behind her and I'm pushing her and we may bump into someone who we know and then we'll stop for a chat and they'll come around to the side of Kitty's wheelchair and chat to me and Kitty's sort of facing the other way. So Kitty can't see who I'm talking to she's not part of the conversation unless I turn the chair around well obviously I do turn the chair round and look look who's here and you know Kitty's just started doing this and then they you know then then then they've got a three-way conversation but people don't expect you to do that they're quite happy to just stand behind her and chat to you and how is Kitty I said well she's only there ask her my my daughter goes out a lot with my my youngest daughter and my youngest daughter Jodie would say that she just gets so wound up by people going they tilt their head and go is she alright? like that yeah you know every time they go out she can count that someone's in the sleep is nonverbal but she's perfected this really theatrical sigh and it's really I don't know how she does it so loud she goes and it's like oh yeah and it's yeah that's well sorry she just gets a bit frustrated when people don't ask her direct questions. Absolutely it's uh it's rude really it's laziness and it's rudeness um ignorance.
SPEAKER_01:I don't know how we get across and overcome these kind of things this fear going back to my girls going out they were out shopping and Tear's power chair broke down because we'd been out for a dog walk and it got drenched with rain. So the electric stopped working two days later and um the thing had snapped off down the bottom where you switch it to manual push. So it only worked one side. So my daughter had gone and got a manual chair to put tear in and then she had to then push the power chair on half manual to the car. That's right, that's hard and she said the people would stop and say are you alright but they were so afraid to touch the wheelchair to try and help that they just kind of went are you okay and then walked away so they were almost gonna help but they were afraid they didn't it's just lack of knowledge and understanding I think. Yeah.
SPEAKER_02:But society doesn't help that yeah I mean this is the thing you know you get these articles coming through the news about motability or or or benefit system or all this kind of thing that you know and and it almost gives the general public an excuse not to care. Those government decisions um those gutter press articles that are condemning disabled people for something that is actually the fault of the government are very pervasive and people don't realise that they're picking up on that attitude. They don't consciously realise it but they are it filters through it's very insidious and that that's that is is a real problem and it is you know I I see an article in the paper about something totally misguided like this morning the Motability article and I think that's going to make it really really hard and it's gonna make fundraising the charity really really hard you know let alone the attitude towards disabled people that it's going to is going to damage.
SPEAKER_01:That's why we need to keep doing what we're doing and keep you know talking definitely keep talking and looking for support but also raising some things that people might not understand about our community. So one of those things and this leads back to one of the things that I really don't like is that if your child needs therapy physiotherapy speech and language therapy occupational therapy it stops when there are school holidays. So they're only allowed crazy therapy term time. So during Easter holidays, Christmas holidays and the huge long summer holidays you have to go private which no one can afford or make it up yourself from things that you've learnt which we we do try and do or go without and if you don't have the resources in you whether that's financial or energy then your child for six long weeks has no physio or no speech and language or whatever. Well that's because cerebral palsy stops during the summer yeah it all stops and it goes away ridiculous. Also as an adult um when you leave college the physiotherapy is not prescribed on the NHS anymore so um you have to fund that privately and I don't like that.
SPEAKER_02:I don't like it no because I mean we've got a fantastic physiotherapist but she's£95 a go. Wow so we can s we can afford it once a month once every six weeks and fortunately you know my daughter's care team are always there at the appointment so they're watching closely and they can you know carry out you know the program but things change so quickly with these young people with physical disabilities especially my daughter suddenly found it really difficult to sit up in bed so I mean we you know we will sort of help help her sit up on the edge of the bed before we get her out of bed in the morning but sort of bending in the middle if you like into a sitting position after lying straight all night's really really hard for her. It's painful on her hips and she's extends so it's really hard and you know so that's something that's relatively new that we've had to get physiotherapy to address. So you have to keep really keep on top of it because physical disability is evolving um and contractures happen and muscles muscles get tight joints are affected hips get pulled out you know spines start to to to curve yeah you really have to keep on top of the of the physical therapy really important.
SPEAKER_01:I know I just feel like you know the system will say well you've had X, Y, and Z so much money and so much support from year dot to year 18, that's enough now. Off you go on your own.
SPEAKER_02:But you know you could say to the to the to the service providers well it's£95 you know a month um for physiotherapy input which we will then quite happily carry on but it needs to be monthly because of the things that change um or you can spend you know X number of thousands of pounds plus rehabilitation on the NHS getting them hips their hips reset. Yeah which is spinal rods and you know spinal fusion um surgery or or or whatever um but but nobody can see beyond the end of the of the annual budget. That's something else I don't like you say look no long term if we do this now long term it's going to save an awful lot of money it's gonna be a lot easier for us now everybody's happy oh no because budget we're not gonna get any more budget until next next April you think oh you know that that is a count I mean I think that's a problem I mean I'm digressing a bit because I'm talking about the NHS as a whole really now but I think that is a massive problem I think these managers come in and they set the budgets for the year you cannot deviate from those but those set budgets. However if if there was an investment made in a lot of cases that would then avoid surgery and potentially other problems as well and then ultimately save a lot of money down the line but they they they never think of that. No. They don't they they look at you blankly when you suggest it okay if I was Prime Minister that's what I would do anyway.
SPEAKER_01:Oh we'd be so good wouldn't we? Oh I would have a yeah talking about roles and careers I guess one of the things a lot of people would say is they don't like the fact they've had to give up a career. I don't mind that I mean it's my life just took a different turn. I wouldn't say that I gave up anything. I carried on as best I could and used my skills that I was trained for in in other areas. But you've still been able to use the skills you've been trained for. Yeah yeah and that's quite some people have to give up everything and survive on this awful carer's allowance that's is it like eighty six pounds a week or something?
SPEAKER_02:PIP, for example, with an independent payment for care and mobility. It's about each of those two things is I think I think mobility one is£77 a week. And um the care one is about the same. But you know, they're grifters. Unbelievable. That that money again, you know, is to is to help them live a life, get out of the house, keep healthy, maybe get some um voluntary work, learn new skills, maybe work towards getting some kind of paid work one day, etc, etc. It goes back to that whole thing about, you know, invest investing time and money in people so that they can then relieve pressure on services going forward. But you know, they don't do that. They don't want to do that. So things just snowball and so do the costs. And that's where we are now. Honestly it is.
SPEAKER_01:There are some things that could be streamlined and made so much easier. One thing I really don't like oh it makes my blood boil is having to reapply for things. My child is has a diagnosis. She is disabled. She was disabled from birth. Give us the damn blue badge forever please why do I have to keep applying and also the pip or whatever it may become it used to be called DLA didn't it? Come on you know she is always going to need high level care she's always going to need high level mobility.
SPEAKER_02:She's never going to be able to walk more than 20 metres.
SPEAKER_01:Stop wasting my time stop wasting our time just give us extended blue badges and extended you know we have to reapply the admin they're paying someone that's a lot of money. Yeah I mean they could take stop that service right yeah put that money into physiotherapy no that won't work.
SPEAKER_02:Well but you should work though somebody should be looking at the bigger picture and thinking exactly right okay so if we give this money if we if we help them in this way because it's not just giving handouts we yes we do get handouts but um those are to cover living in care expenses and and you know if if you go into a care home for example you lose your benefits all of it. It's not like you're you know it's piling up and you're suddenly a millionaire which is what people seem to think investing um time support and yes money into um our young people will will rip would reap dividends for everybody. Everybody would be happy. Exactly everybody would be in everybody would be would would be winning.
SPEAKER_01:Yeah. Is there anything else that we don't like? I mean we could chat all day to be one single I don't like the fact that different people are given different levels of support and packages I guess is that because I didn't speak up for myself enough at the time that that family over there has got more hours of carers than we ever got or you know more of a budget than we ever got? Was it my fault? You know I kind of think what did I do wrong? What am I doing wrong? When you see that one family might have a different package. You see what I mean?
SPEAKER_02:It should be like standard I guess they they look at each situation differently than when you when your daughter was assessed that morning the social worker may have got an email saying we're nearing the end of our budget. Keep it down. You know it could have been that it could have been the time of year that you were assessed. It could have been it could have been how experienced a social worker assessor was um it could have been that you know you had more family support it could have been I don't I I mean I I I don't know but I've seen it too. Yeah some families seem to get get a lot more than others. But I I think there's definitely you know something to be said in the squeaky wheel gets the grease but in order to be a squeaky wheel you need more energy than a lot of us I don't have that.
SPEAKER_01:I don't well not certainly because I'm getting older I have less um I I care less like what they think of me. But I've got less energy.
SPEAKER_02:I've got less energy to Well I've always been quite gobby and mouthy um and you know I and I I've definitely been viewed as being a bit of a troublemaker um in the council and so on through the charity. I absolutely don't care what they think of me anymore because these kids not just mine all the children that we support all the families that we support um mean more to me than than my reputation in a local council office I mean please come on they deserve every ounce of of of what I've got.
SPEAKER_01:You say but I admire you for the way that you are because I don't like being strong all the time. It's not I don't know about it. I don't like I don't like being you know the one that has to just be so powerful and forceful. Sometimes I would just like a Sunday where I've got nothing to do, no worries and I can sleep in stay under that duvet, read that book you know, have no pressures, no jobs to do and then go for a pub lunch. Our lives are never like that are they?
SPEAKER_02:I th I suppose for me it's been um yeah I've I've been given, I've been gifted and you know a a a disabled child and I feel that uh now trying to make the world better for disabled children, disabled young adults, disabled people is kind of become my life's work. Well it's definitely become my life's work. They are my primary you know my priority so I'm never off that. I I'm in I'm I'm never I don't even know if I would be able to but I would um I'm always thinking and emailing and posting and you know I think it's just because it it's my daughter and to have a break from that kind of constant thinking and constant worry and constant how can we make this better gosh I I I can't even imagine how that would feel anymore.
SPEAKER_01:Well you've got a you've got a husband you've got a partner to kind of let go on I think maybe I'm coming from single parent kind of situation. It is different. But um yeah I would like to have maybe we can just have a carers holiday a national that would be really carers day where then everyone just takes not care of our children and or our young adults but actually take some of the stress away so that would be the law you have to come in do a load of paperwork for the parent do a load of chasing that's the the stuff that we would like to be really a mum and and you know th think of how you can you know m make life easier without having all that goes with it.
SPEAKER_02:Because you can have an idea you can think okay if only this could if this could happen that would transform things for a lot of people and then you think oh god but what have I got to do to make that happen? It's six months hard graft and it still may not work. I mean people think oh gosh building for future you guys have done amazingly well oh you know how have you managed to open this centre and run it alongside caring for your own children and etc etc you know you just everything seems to be a success no there are ten times as many failures as there have been success look under the rug look under the rug I like that we've done it for the joy of our children the joy of other children and supporting other families which we love doing and it's not easy and it hasn't been easy and we've failed we've made mistakes big time gosh oh yes um you know and there's you know we're talking today about things that we don't like we don't the things we don't like about being in this environment you know I don't like I'm gonna say it I don't like driving big wheelchair accessible vehicles and I never have I think they've caused some of my arthritis really the big doors slamming the big doors oh gosh yeah pulling the big lids down getting the wheelchairs yeah in the back of physical workout physical yeah physical workout and when oh we had a wheelchair accessible vehicle oh she must have been about eight years old I think and it's great it's fantastic it's cost a lot of money over the years but brilliant for getting wheelchairs around and I'm very grateful but I guess I wish I'd had the money over the years I could just have a little little two seater somewhere you know and drive around and the other thing that I really haven't dealt with over the years and I probably never will is having carers in my home.
SPEAKER_01:Thankful for the care system thankful for the budget that my daughter's wonderful new counsel give her now and she lives on her own so it's not a problem anymore but I didn't deal with that for years and years and years having another woman in my house. That's interesting. She was there to look after my child and do some of the hard work work extremely hard they've been incredible over the years. But there's some people that I just didn't deal with I didn't cope with they would do things differently to me in my house. They'd you know they'd be there at my kitchen sink feeding my child. Yeah um and I really struggled with that and I I don't think I would ever adapt at that and walk around in your underwear which you can you can't do when you've got cares in we're laughing now which is good we should probably end on a high note definitely definitely like we said at the beginning we're very grateful for our lives and we adore our children and our families and we're yeah thankful for them. But we just being honest there's a lot of things we don't like about the world that we live in and we've tried our best our damnedest to adapt to the situations we've been put in I think we've done bloody well but it's been hard and like I said just now there are things we'll never get over or get used to. No that we just do our best every day and I know that the listeners out there the same thing. Hopefully we've struck a chord with you there must be some things that are on your mind and the things that you want to vent about and be honest about we're a safe space. Let us know you're not alone just remember that we're all here we're all doing our best and sometimes you know that's just that's just enough. If you want to share your own things that you don't like and the things that you can't say out loud to anybody else message us at let's take care at bftf.org.uk and remember that taking care of yourself isn't selfish it's essential look after yourself let's take care thank you for listening please like and tell your friends about our podcast in the next episode we are absolutely thrilled and honoured to have the leader of the Liberal Democrat Party in the UK come on and talk to us Ed Davy will be with us talking about caring looking after his son and everything that goes with it and we're thrilled and we can't wait so tune in. Really good episode thank you
