To call up maternity unit and let them hear the meltdown they've just caused my wife.

[MissusWrex]

Ok well I wouldn't really do that but am feeling very angry right now.

This is my other half's account. She has autism spectrum disorder and dyspraxia.

We had a cesarean section booked for this Thursday. This morning we recieved a call asking us if we could move it up to tomorrow.

We had a discussion about it, checked whether we could change childcare etc. and my wife agreed after she'd worked it through in her head.

We got everything packed and ready. Sat down five minutes ago and received another phone call.

Our appointment had to get changed to Friday. We were given no choice about this, couldn't change back to our original date. Just a sorry, it's got to be Friday now.

We can't get childcare for Friday though I appreciate this isn't the hospitals problem.

What I am very angry about though is that now my heavily pregnant wife is having the mother of all meltdowns upstairs. She is screaming, banging around and I'm just praying she isn't hurting herself. I can't restrain her obviously and she is immensely strong during these episodes which are actually exceptionally rare these days.

It has been a difficult and complicated pregnancy.

AIBU in thinking that maybe they should have just given a little extra consideration given her disability and not changed dates twice in the space of a few hours?

Should I call PALS, I just want to let someone know what this has caused.

OP I am sorry for your previous losses. pregnancies after loss are horrendous. I fervently hope this baby is OK and that they get him or her out asap. My thoughts are with you.

Tantrum is cruelly inaccurate word to use for an ASD melt down.

Why might tomorrow suddenly be moved back off the agenda? They're probably having to do a c section on a preterm baby, where today's clinic scan is getting increasingly worrying (or mum's pre ecclampsia is getting out of control), so they need to get them out....but they need 24 hours of steroids to mature up the lungs. Probably about the most common reason for "we need to take over a caesarean slot tomorrow - no, not today, but not any longer either".

I really wish that the NHS were funded to have enough spare theatres, theatre staff, anaesthetists, obstetricians, scrub nurses, ODPs, midwives, and paediatricians to be able to never need to change a planned c section date. Actually, to be honest, I'd settle for enough funding that I could be 100% certain to always have enough people for every conceivable emergency. Sadly, however, we've had years of swinging cuts, criticism, and demoralisation. With the current lot basically trying to break the NHS, in order to privatise it. So, very unfortunately, we're currently stuck with having to prioritise to clinically emergency then clinically urgent, and then the rest. And I suspect that your DW has fallen foul of this.

I do think it might be useful, afterwards, for you to bring this up to PALS. Not, please, as a big complaint type thing - because that will involve the consultants losing even more hours (many of them!) from actually providing hands on care. But as a "can we help educate people to make this better" kind of thing. Though....obviously we can't just educate midwives on "what to do with someone with ASD", as every person with autism is as different from every other person with autism as every NT person is from the next one. But perhaps to suggest questions they could ask during booking? Perhaps prompting whether there are particular problems with change, and how any unpreventable change could be best conveyed? (Also gobsmacked it was the consultant on the phone for a day change - suspect that was actually them trying to make reasonable adaptations....albeit not managing it).

It's just....you've only seen 3 full melt downs in all the years you've known your wife? So I don't think a team who has only met her a few times over the last few months was likely to be able to predict this severity of reaction. Even with the best will in the world. So, yes, absolutely raise suggestions about how to improve the service. But not sure blame, apart from being a natural emotion, is likely to help.

Best wishes for a safe delivery.

OP have you considered that your wife's appointment may have been put back because there are other ladies with more urgent needs for medical treatment who have therefore been prioritised?

Just sayin'

I am so sad to see the responses you've received OP, particularly given the amount of posters on here with children on the spectrum who may potentially face similar difficulties in adulthood.
I am NT, but that sort of chopping and changing would have driven me somewhat crazy also.
I really feel for your dw. Pregnancy is stressful at the best of times. I would make sure that the midwives on admission are made aware of your wife's condition. It really should be flagged as something to be considerate of.
I hope your DW has a lovely uneventful healthy delivery when the time comes.

As terrible as your wife's meltdown is for her, they don't change these things on a whim. Chances are her c-section has been rescheduled because someone has come in unexpectedly.

My son was premature, the team we took and the bed he took in special care may have been scheduled for someone else that day, but they were tucked up safe in their mother's womb, my son was not.

OP have you considered that your wife's appointment may have been put back because there are other ladies with more urgent needs for medical treatment who have therefore been prioritised?

Yes that has already been acknowledged.

Just saying'

Of course it will have been considered.

You're missing the point massively.

Sorry I did think I might get more replies on here or chat, hence I ventured out from SN.

I won't be contacting PALS as a complaint, more a 'this happened and I this is what I think would have helped' sort of think.

Thank you for the support and it's nice to hear from others who are a bit further along than us and doing well.

I feel very sorry for you both. Too change the date twice is a bit of a mind-bend. I have a c-sectioned booked myself so can empathise. I have had two other planned sections and they have never re-arranged me. I can only imagine that they absolutely had to for whatever reason. For now I would be tempted to put this to the back of your mind (because you can't change the date and if you did your wife would have to re-think this all again) and concentrate on the situation at hand with the child care and with the birth of the baby. I think there is added pressure on you right now worrying about the op and your wife's state of mind. Once the baby is here safely you can turn your mind to how this was dealt with.

I agree with Augusta about how to take this forward. Maybe you need to tell someone after the birth how upsetting this as been so that it doesn't happen to someone else. Wishing you the best of luck.

OP so sorry to hear of the distress the last minute changes caused your wife.

I have been in this situation facing a elcs with serious complications and a premature delivery. I too was rescheduled last minute which led to me crying hysterically due to the stress. Then had to find childcare for 4 and 18 month old for another date. In the end I was glad they rescheduled. Turns out they cancelled because the labour ward was so busy they had to close and had no HDU bed for my aftercare. In the end I had a morning elcs with two senior consultants present. I nearly died in delivery despite all resources being available, I dred to think how things would have gone if they had just tried to fit me in as originally planned.

I would try to speak to your wife's named midwife/consultant tomorrow and explain her distress and affect this has had on her. They can help plan to manage her anxiety on the day.

OP you have dealt with some of the more twattish elements on this thread with grace and calm.

I would've been much, much ruder

OP, you sound lovely. Very calm and gentle and measured. I know whose children I fear for, amongst the posters on this thread, and it is not yours.

for you and for your wife.

You're welcome OP, i have more of those where that came from :) I have ASD myself, and a 9yo DS with the condition, so i understand how hard this must have been for your DW!

The last weeks of pregnancy are hard enough without people throwing a spanner in the works, however necessarily it might have to happen.

It might pay you and DW to look up The Curly Hair Project, its run by a lady called Alis Rowe and is aimed at women and girls on the spectrum.. lots of useful books and things to help explain life with ASD and how to cope!

Your dw is nbu to be upset. I have asd myself and this would have made me go into meltdown too. Some of the attitudes on here have made me furious. You sound like a lovely dh and I hope your dw is ok now. I wish you both the best and hope baby is with you soon.

I think it's lovely you've posted to get some support/advice for your wife and that you feel so upset for her. I don't have ASD, just normal depression, but I'd be similar and did get very upset and perhaps distressed during pregnancy for similar reasons where things were out of my control and my anxiety was high. All the expectation surrounding the booked date was there and then it's gone. All the childcare arrangements planned and the stress of it not working out. The relief of a healthy baby and the end of an uncomfortable pregnancy pushed back another day.

I hope you are able to make it work and get back on track - practically and emotionally. Hopefully this will fade and be unimportant once baby arrives.

I would suggest calling the consultant's secretary tomorrow morning to explain the distress caused and to request that no further changes are made if humanly possible. Then some positive and negative feedback with useful suggestions via PALS once all over and done with.

Hope it all goes well for you

so being short staffed is not a defence in law to claim for disability discrimination?....how about it being short staffed and it being a dangerous situation for the mother and baby.....surely safety is paramount!

Potatoface, go back and read the posts about reasonable adjustments properly. No-one is saying that the hospital shouldn't prioritise emergencies. The point is the need to take OP's wife autism fully into account in the way the hospital deals with that.

My son has ASD so I get it. I don't have ASD but I remember my first c section, and waiting for it, it being cancelled 3 days in a row and I was so enraged due to frustration and fear. The attitude of staff was very cruel (I used to be a nurse so I get its fraustrating for them too but their attitude was poor and screamed of I don't care attitude) ... I really feel for your wife and would likely be enraged too with the ASD factor in too I can 100% get why she is in a state.

Complaining won't get you anywhere and won't help you feel better because They likely can't do anything and will be equally fraustrated when they are under pressure and having to deal with a complaint.

Contact the PALS ... Make it about educating on ASD and that although it may not be an emergency it is a major factor in her condition to not switch and change things. The thing that would worry be about Friday is if it's cancelled on the day it won't be until Monday and that could be a major issue for your wife after all she has experienced, contact PALS and see what they say. Write it all down so your points are clear and concise and it's not just a moaning session.

Good luck

My son has asd and once had a meltdown over a subway. The only thing he will eat from there is a meatball sub. The shop didn't have any meatballs. This is the only subway he will go into and we have to wait for a specific table.

Good luck to you and your DW for the birth.

MissusRex I agree it would be beneficial for you to explain to the hospital the problems the changes have caused, but plenty of people have said this. i also think the midwives and staff need to know your wives reactions to stress to help them assess her in labour. However, What I really want to say is you have come across as such a lovely person, very calm, reflective, strong and kind (especially to the less understanding people). Thank you for raising the understanding of autism and challenging the "wrong" views with such integrity.

OP your poor wife and you,I would make a complaint expecially if they know your wife is autistic.They should have tried to be as careful as possible when it came to making any changes to when your wife would be admitted to hospital.

I do know where your coming from we have 5DC and 2 of our DC are autistic,DS14 and DD8 our DD asd in on the more extreme end of the spectrum I could imagine her reacting in the same way when she's an adult if such important plans were changed at the last minute.

I hope you can manage to get child care in place for your DD,I'd also make it clear when you complain how difficult the last minute change has made it for you to find appropriate care for your DD as well.We struggle with being able to find any suitable child care as well,as of yet we've not been able to find any.