To think some people just aren't cut out to parent special needs children

[Troubleinpergatory]

I feel this way at the moment.

Is it a universal thing among parents of children with significant needs / extreme challenging behaviour or do you think that some people just aren't cut out for the job?

I've never felt that I wasn't good enough for my NT children, just completely unable to meet the needs of my special needs one

Op I don't think Iv ever met a special need parents who thinks they are good enough. Most are tired, worn down, close to breaking if the correct support isnt in place.

I found cbt useful for dark spiralling thoughts.

Is your dc in sen school? My friend uses her direct payments for a care assistant to meet her son off the bus outside their house and she takes him in her car to do something he enjoys two days a week, So at least for those two days she gets a her non verbal dc home happy and not aggressive after pressure of travelling home from school

I actually find it almost offensive when people say “ oh I know I couldn’t cope” , well , I don’t really have a fucking choice , most of us don’t . It also implies that I am in some way Wonder Woman which again I am definitely not . Plus , what is “ coping “ , on the outside I may look like it but inside I am completely heart broken, I think daily about the future and what is going to happen to her . Yesterday I cried driving home . She’s 34, it gets harder and harder. So no , I’m not cut out for this but there is no alternative unless we go back to the days of locking people up in institutions. People think I’m amazing which actually upsets me as truly I’m broken.
When people say “ oh I’m not cut out for that “ they might as well add “ and thank goodness I don’t have to “ .

I think some people aren't cut out to be parents at all. They're the ones that are abusive, or neglectful or toxic. You worry this because you love your DC. None of us are ever going to be perfect parents whether our DC are NT or have SEN. You try to do your best with the hand you've been dealt, that's all anyone can do. By that I don't mean you're never exhausted or over it, that you never make mistakes or fall over crying, or that you can always fight their corner, you're human, life is messy and hard. You try. I don't know any parent with SEN DC who hasn't been there, who hasn't thought they weren't cut out for this, or that someone else would do it better or that they were failing their children. On my best days I hope I have these children for a reason, that something bigger than us knew I could give them what they need, on the bad days when I've been kicked and hit and screamed at I feel at once angry, and useless, like I'm failing. Everything I have to deal with alone hurts so much, but their needs are also the thing that makes me drag myself up again.

@Nickwinkle

Honestly... I feel like some parents shouldn't be parents at all, special needs or not.

I take my hat off to parents of SN children. You're absolutely not being unreasonable to think that some people couldn't do it. My brother has brain damage from a bad birth and the impact it has on my mum breaks my heart. It's nothing to do with her being a bad mum, it's just that looking after a child with SN is extremely difficult. Not even down to the extra care they may require; but the really annoying behavioural habits they may have - asking the same question 50 times an hour and getting completely obsessed over things. Enough to drive you potty without worrying about the other stuff!

I can't offer advice on how to cope because I certainly do not have the patience to be able to bring a SN child in to the world but just the fact that you've done it and you're doing it should give you some comfort.

Are they enrolled in a SN school and have you tried talking to them about options available on additional care/support?

Lots of disabilities don't always become apparent untill a child starts developing ,it's nothing to do with wether you have patience or not ,I and many other parents of children with disabilities,are just muddling through best I can ,and I cope because I don't have a choice

@Sahara123

I actually find it almost offensive when people say “ oh I know I couldn’t cope” , well , I don’t really have a fucking choice , most of us don’t . It also implies that I am in some way Wonder Woman which again I am definitely not . Plus , what is “ coping “ , on the outside I may look like it but inside I am completely heart broken, I think daily about the future and what is going to happen to her . Yesterday I cried driving home . She’s 34, it gets harder and harder. So no , I’m not cut out for this but there is no alternative unless we go back to the days of locking people up in institutions. People think I’m amazing which actually upsets me as truly I’m broken. When people say “ oh I’m not cut out for that “ they might as well add “ and thank goodness I don’t have to “ .

Yes, I hate the I couldn't cope or how do you cope. For starters I wouldn't call this coping and secondly because I don't get any bloody say in the matter. I keep going because I have to, not because I'm frigging super mum. I get this because of my chronic illness too, the I couldn't cope with this, how do you do it. The alternative to coping is lying in my bed crying for hours. I didn't get a choice about being sick or having DC with SEN, I 'cope' because I have to and the inside is a hell of a lot messier then you'd guess from the outside.

I hear you. I understand you. The sick feeling you probably get when they are about to arrive home. The inability to switch off even when they are at school.... thinking.... what will happen today. How many emails, calls will I get.
The envy when you see their peers out for fun days posted on social media.
The paranoia that everyone in the school thinks you are a shit parent.

Your post and others on this thread have reminded me of when DCs were young. I had 4 boys in 6 years and in the middle of it all DS2 was diagnosed with ASD & SLD. I just took one day at a time. If I got through the day, I considered that a result. Well done OP, you are getting through days. I met amazing, lovely people along the way, many of whom I'm delighted to say became good friends. Keep going, you do get through it. My DSs are now aged 29,28,26 & 23. Phew!

I also hate it when people say “ ask for help” or “ have you thought about respite “ .
Brilliant. Wish I’d thought of that ! Oh no wait, I have, there either isn’t any , there’s a huge waiting list and you’ll be lucky to get respite once a year , your child hates leaving you and doesn’t want to go. Or you get direct payments to sort your own which again doesn’t work as where is this mythical respite care ?

@Sahara123

I also hate it when people say “ ask for help” or “ have you thought about respite “ . Brilliant. Wish I’d thought of that ! Oh no wait, I have, there either isn’t any , there’s a huge waiting list and you’ll be lucky to get respite once a year , your child hates leaving you and doesn’t want to go. Or you get direct payments to sort your own which again doesn’t work as where is this mythical respite care ?

Oh ,I know ,I'm sure people mean well but they just don't get it if they have never lived the life I have seen similar threads with blasé suggestions of just putting your child in residential school ,for one thing ,you can't just put your child in a residential school as it takes time and the lea have to agree to fund it and for another even if it is a decision parents make ,it's an incredibly hard decision

@Christmaswindows

I hear you. I understand you. The sick feeling you probably get when they are about to arrive home. The inability to switch off even when they are at school.... thinking.... what will happen today. How many emails, calls will I get. The envy when you see their peers out for fun days posted on social media. The paranoia that everyone in the school thinks you are a shit parent.

This! Is exactly how I feel!

it is terrible that there's so little support in place for those of us dealing with things at the sharp end.
I have 2 with complex needs and tbh the hardest part if looking after them is dealing with the constant bureaucratic battles to try and get them what they need.
it seems I win one battle only to be faced with the next mountain to climb. Often the v agencies that are supposed to be there to support you create more stress by fighting against you at every turn.
I would never have believed some of the stuff we have endured over the years if I hadn't lived it myself.

@Nickwinkle

Honestly... I feel like some parents shouldn't be parents at all, special needs or not.

I take my hat off to parents of SN children. You're absolutely not being unreasonable to think that some people couldn't do it. My brother has brain damage from a bad birth and the impact it has on my mum breaks my heart. It's nothing to do with her being a bad mum, it's just that looking after a child with SN is extremely difficult. Not even down to the extra care they may require; but the really annoying behavioural habits they may have - asking the same question 50 times an hour and getting completely obsessed over things. Enough to drive you potty without worrying about the other stuff!

I can't offer advice on how to cope because I certainly do not have the patience to be able to bring a SN child in to the world but just the fact that you've done it and you're doing it should give you some comfort.

Are they enrolled in a SN school and have you tried talking to them about options available on additional care/support?

I don't want to sound unkind, but have you actually read any of the posts here by real life parents of children with additional needs?!

I knew mumsnet was for me when I was in a very dark place with dc a few years ago. I found a thread by a SN parent ripping apart the twee 'Welcome to Holland' story. It was such a laugh out loud thread and really spoke to me
No we also not special parent
The support/diagnosis is crap
We are exhausted
For me other parents didn't want to touch me with a barge pole so it was lovely. Until I found other SN parents I didn't make a single friend through children
Living with violence is scary

I hope you get help op x

And even on this thread we have parents of non SN children saying I couldn't do it 😫
Honestly I want to scream FO at them. It's not a compliment and you are not helping

Wow thank you for the solidarity, my heart goes out to all of you who are in the same position.

Naively, I didn't realise so many others felt this way. I've always believed myself to be failing at what others take in their stride (that's not to minimise the struggles others have, that's just me feeling quite inferior to other parents with disabled children who I felt do a much better job than I do)

He has just been given a place at a specialist school which he starts in September which I'm so grateful for. They have a bus which will pick him up and drop him off every day and that will help so much because he can't bare walking anywhere and that always leads to me getting hit.

But then I look at a few groups i follow on Facebook and see some parents have managed to get their child a disability social worker, respite, council funded adaptations to their home, safe space beds etc and I think to myself wow you have done so well for your child. They have so much support that I've tried and failed to access, been fobbed off for, and while I'm so glad their child has these things it also feels like another failure on my part which adds to the self loathing.

We're in a small flat and I think about how shit life is for DS because I can't even give him a bloody garden.

I actually got DS some boxing gloves and pads which I tried to encourage him to hit when he's anxious or frustrated, that went down like a lead balloon and he just threw them at my head.

There are brighter moments which I relish in, like this morning he spotted that my daffodils had opened and proudly announced "look! An owie bowie doh doh flower" which I think is a reference from in the night garden.

Hang in there everybody

@Sahara123

I actually find it almost offensive when people say “ oh I know I couldn’t cope” , well , I don’t really have a fucking choice , most of us don’t . It also implies that I am in some way Wonder Woman which again I am definitely not . Plus , what is “ coping “ , on the outside I may look like it but inside I am completely heart broken, I think daily about the future and what is going to happen to her . Yesterday I cried driving home . She’s 34, it gets harder and harder. So no , I’m not cut out for this but there is no alternative unless we go back to the days of locking people up in institutions. People think I’m amazing which actually upsets me as truly I’m broken. When people say “ oh I’m not cut out for that “ they might as well add “ and thank goodness I don’t have to “ .

so true mines mid 20's so get you. imo its othering. as if parents of disabled people are some how different. guess what we are not.

I also think that most people have a belief that the system works and that when the chips are down the system will kick in and provide.

It's only when one has first hand experience of the system that it becomes apparent that it doesn't work and in many cases doesn't exist. Eg respite. Anyone looking on official guides and websites would think that respite is something freely available, and that there is specialist funding for children and extra income via DLA etc.

But in reality the provision is patchy, no existant and impossible to access for almost everyone.

The entire system is predicated on parents doing everything willingly and for free.

I'm barely cut out to parent NT kids if I'm honest.

Parenting is not for everyone and even more so parenting of kids with additional needs. But as parents we just do the best we can with what we've got.

@Troubleinpergatory

Wow thank you for the solidarity, my heart goes out to all of you who are in the same position.

Naively, I didn't realise so many others felt this way. I've always believed myself to be failing at what others take in their stride (that's not to minimise the struggles others have, that's just me feeling quite inferior to other parents with disabled children who I felt do a much better job than I do)

He has just been given a place at a specialist school which he starts in September which I'm so grateful for. They have a bus which will pick him up and drop him off every day and that will help so much because he can't bare walking anywhere and that always leads to me getting hit.

But then I look at a few groups i follow on Facebook and see some parents have managed to get their child a disability social worker, respite, council funded adaptations to their home, safe space beds etc and I think to myself wow you have done so well for your child. They have so much support that I've tried and failed to access, been fobbed off for, and while I'm so glad their child has these things it also feels like another failure on my part which adds to the self loathing.

We're in a small flat and I think about how shit life is for DS because I can't even give him a bloody garden.

I actually got DS some boxing gloves and pads which I tried to encourage him to hit when he's anxious or frustrated, that went down like a lead balloon and he just threw them at my head.

There are brighter moments which I relish in, like this morning he spotted that my daffodils had opened and proudly announced "look! An owie bowie doh doh flower" which I think is a reference from in the night garden.

Hang in there everybody

I do feel there is a huge postcode lottery. I live in a relatively well off LA and we did get respite and a HA house and a disability social worker. Then I feel guilty as I can see other families under other LAs in a much worse position than we are in not able to access any of it.

It is all horribly horribly unfair.

There is also letuslearntoo.com/the-send-money-survey/ which fully supports the other aspect of the inequality. I go into some schools where parents can afford all of these things and others where the majority simply can't and the result is those kids are those who go without. Those are the schools who end up overwhelmed because the kids haven't got what they need. It is all such an unfair system between the haves and the have not.

I have a dd with sn...she is actually easier to look after than my nt dc! In fact, I often feel like a bit of a fraud as a sn parent. What I will say is raising children when you are struggling with your own mental health is absolutely overwhelming. Please try to look after yourself op

@Dishwashersaurous

I also think that most people have a belief that the system works and that when the chips are down the system will kick in and provide.

It's only when one has first hand experience of the system that it becomes apparent that it doesn't work and in many cases doesn't exist. Eg respite. Anyone looking on official guides and websites would think that respite is something freely available, and that there is specialist funding for children and extra income via DLA etc.

But in reality the provision is patchy, no existant and impossible to access for almost everyone.

The entire system is predicated on parents doing everything willingly and for free.

At the moment even IF you manage to get an assessment and IF you get respite agreed then finding carers to provide the respite is near impossible. We succeeded at the first two, the third was even more horrendous

You are not alone OP , we are all doing our best ! It's all we can do !
I sometimes want to comment on the ante natal threads about babies with disabilities but it always feels wrong but I believe the media have rose tinted a lot of disabilities and want to scream don't do it but I don't think it's my place .
I could tell you countless stories of life with children with downs and other sn which are so horrific but us SN mums have a kind of code that only other SN mums hear the truth because I don't think NT mums would believe the reality of it !

@Troubleinpergatory really good news about the special school place and transport x

I have worked for the majority of my professional career with children and young people with additional needs. I can remember when I started feeling so guilty because I seemed to be able to deal positively with situations at work that I couldn't at home. But then I realised at work we had breaks, we worked in a team, we ate our meals in a staff canteen. And the staff and children don't have to navigate the emotional connection that exists between a parent and child .

The continuing posts from people saying they 'couldn't cope'...do you think we all find out during some diagnostic test during pregnancy, and then decline a termination? The vast majority of us carry and give birth to babies whom we adore, and then over time there is a growing realisation that this baby or child does indeed have additional needs. So we have a baby or child whom we know and love. And we cope. Because we don't have a choice. So please, please actually read what we parents are saying before offering comments that we are telling you are trite and patronising.

Nobody is cut out for special needs parenting, we’re all just limping through the minefield the best we can.

It doesn’t make you a bad parent if it’s not easy, or if you don’t feel like you’re on top of things. It’s really, really bloody hard.