DP and work

[TitsalinaBumSquash]

This is my first post in AIBU, but I really don't think I am but I'd be more than happy to be told otherwise.

DP has been contracting with a company for the past 2 years, he's very well respected in The company, he was head hunted by them and they really chased to get him and since he's been there they've made several offers of permanent employment and have bent over backwards to meet his needs.

He's finally agreed to go permanent, and has been in talks to iron out the details, they've have agreed to his requested salary, over time rate and holidays and the other little bits he's added into the contract of employment. So that's all great.

Here is the sticking point.

Our DS (my bio his step) has got cystic fibrosis, as you'll probably know it's a life limiting condition and his health will deteriorate until the end.
He is 9 now and at the point where it is likely to start going down hill at a more noticeable rate, we as parents need to consider the changes it will make to our lives.

However, DP refuses to tell his employer about DS's condition he says it's not something they need to know and it could damage his chances of getting the right package at work.

My argument is that we have 2 other children, (one his and one step for want of a better term, he treats them all equally and is a great dad to all 3 DCs)
Sometimes he will need to work from home, the other 2 will need to be collected from school and cared for overnight while the other one of us in with DS in the hospital, which is sometimes not our local but 2-3 hours away.
I feel his employer should be aware of this, it won't mean he can't work, his work is more than do able from home and he's proved himself time and time again that he will always get the job done, even if it means surviving on 1 hours sleep for days/weeks at a time.

AIBU, to think he should tell them so they are more receptive to him needing more flexibility in the future?

[TitsalinaBumSquash]

I always keep a background flame of hope, but DS's consultant has always been consistent on warning us about not being realistic in our expectations, he's gently pointed out that cf patients of DS's generation shouldn't be too hopeful on gene therapy but transplants etc are still out there in the future although DS is a ling way from that point yet.

DP says I'm honest and open to a fault so yes my approach of telling the employer everything and hoping for them to sympathise and flex to suit us is unrealistic and a bit naive, especially in this day and age.

I shall keep shtum and let DP take the lead. He seems to be doing very well so far in his career so I have no reason to think he can't handle things the best way.

[LEMmingaround]

oh, that is sad, i am sorry - i was aware that gene therapy was available at some level for CF sufferers, and am aware that there are more than one mutation - my assumption was that it would have been ok to replace any of the defective genes with a healthy copy, but i can see (background in genetics but not clinical) that actually it would depend on how the mutant copy behaves as sometimes the faulty gene will cause other problems within the cell rather than just not working. I hope that they manage to bring a "cure" or something to tide him over until that is available really soon - I guess you have to be practical but genetics is an area that is moving so much more quickly thany anyone would have predicted, so there is always hope xxx

[TwoThreeFourSix]

I can totally see both sides.

DH and I work in the same profession but have 2 very different approaches to our management/clients (we're management consultants).

I tend to be very open (e.g. when I was working towards a black belt grading in karate I asked my manager and client if they minded me leaving "early" (7pm) twice a week and explaining the reason and of course I made up the workload by coming in early).

DH doesn't give any personal information unless absolutely necessary. He considers that he manages his own diary and workload and as long as no-one suffers, he shouldn't have to justify what he does.

I had to really nag him to warn his management and client that he'll be taking a few days off for the birth of DS2 this May!

So overall, I think your DH is right (my DH would never ever consider warning a potential employer about things that may or may not happen in the future), but also understand your reaction as my natural instinct is to share anything personal which might impact my employer.

[TitsalinaBumSquash]

I don't mind at all, not enough people know about Cf!

There is a 'cure' but it's for one of the rare mutations of Cf more commonly known as the stop gene, it's where the genetic code is incomplete rather than wrong.

DS has the most common mutation of The gene (double DF508) and although gene therapy trials are going on, they've only just competed wave one with wave 2 not set to be finished until 2017 then they'll need to do wave 3 before taking it for approval to be manufactures, we're looking at another 10 years before a possible 'cure' may be around.
DS wasn't diagnosed until he was 2, he has a very, very rare make up to the structure his lungs, he has an extra lobe on the right side which is where all the infection sits, it only has one entrance and exit so draining it is near on impossible. His level of lung damage is already further on that you'd expect from a normal cf child his age, he is also intolerant to many of the available antibiotics which is also a challenge.

Luckily DS2 doesn't carry the gene and DP doesn't carry it either so DS3 will only ever be completely clear or a carrier.

[LEMmingaround]

Just out of interest, i hope you don't mind me asking and please feel free not to answer, but has their been any talk of gene therapy for your DS?

[LEMmingaround]

I am sorry to read about your DS, that is harsh

I would be inclined to agree with your DP though. In an ideal world he would tell them and they would recognise that he has been an asset to the company up until now (otherwise they wouldnt be head-hunting him) and that he can clearly do his job well. Sadly it is not an ideal world and the company will only have their own interests at heart, so if they think that his work will begin to suffer they may well withdraw their offer or make it less attractive.

The thing is, none of us have a crystal ball and things happen, people get sick and if affects their work. This can happen to anyone - So i would be very much taking the "cross that bridge when we come to it" approach. Your DP will be in a much better position to ask for flexible working position if your DS needs extra support if he is in a permanent job where he has a record of being a valued worker than another temporary job where they would probably just terminate the contract if he starts needing time off etc.

I do understand where you are coming from OP, but in today's climate it really is a case of looking after number one.

[TitsalinaBumSquash]

I will follow DP's lead over it. We have only discussed it briefly once, and I have just spoke to him on skype to say that in hindsight I agree with him and am 100% behind him in whatever he does/says.

Now to wait by the phone for DS's latest sputum sample (bleugh!) results to come in to see if I'll be carting all 3 of them to the hospital today or not.

[BrunoBrookesDinedAlone]

I can imagine that a tiny part of you is feeling conflicted at the thought that your DP isn't being 'loud and proud' about your DS's condition, and the fact that he is a stepdad brings an extra level of sensitivity to it?

That's totally understandable, but I think misplaced. I think your DH is fighting your DS's corner in a different way - he's being canny, he's making sure he's got a permanent job with the best possible package in place so that the family has the best cushion it can have.

He will see that as doing the best he can for all the family, especially your DS (permanent job = far better than contracting if you have a sick child to care for!) and will almost certainly be less inclined to see it as having personal overtones.

So if that's part of it I too think you should follow your DH's lead here.

[TitsalinaBumSquash]

Luckily we always keep a contingency of 6 months wages in the bank in case he has to take unpaid leave, plus he wouldn't actually be not working, just working from home rather than the office which is 10 mins down the road from our house! (Main reason why he is happy to go perm)

As for bing an agreeable AIBU-er, I've been here 10 years and seen more than enough people get torn to shreds in this board!

[JoinYourPlayfellows]

I'm guessing that one of the reasons he want to go for a permanent contract now is because of what might be coming down the line in terms of your son's health.

So he probably wants to get the deal all signed and sealed and to establish himself as an employee before he gets into the details of his child's health issues.

Makes sense as an approach to me.

[DarlingGrace]

Don't take this the wrong way but many employers are quite strict on family time - and I'm guessing you aren't married or in a civil partnership etc and some employers are not flexible.

BILS employer, for example, only allows 5 days close bereavement (spouse or child) and 2 days for extended family (parent or sibling) and nothing for any one else. They certainly don't pay for as hoc days. He works for a large national chain.

I work for LA and I only get 2 paid family days per year. Anything else would be unpaid. I know people who have had to go through the whole interrogation as to what 'partner' and 'family' means - where as there is no grey area with spouse and step/child.

[TitsalinaBumSquash]

I think in the past he has just said that DS was ill and dint give details.

He's always been really great in the past so I'm not worried about it.

[JeanSeberg]

I do really appreciate the opinions of everyone and that fact that no one a has flamed me!

You're definitely the most reasonable AIBU-er I've seen op!

Best wishes to you and your family and congratulations to your husband on his new permanent contract.

[Ledkr]

My dh is the same about stuff at home and it does annoy me.
Our baby was seriously ill as a new born then had significant problems after which were hard on me as only me or dh could care for her.
More recently I had major surgery and felt he'd have had far more flexibility to help me had employers known.
In the end a colleague found out through his wife and insisted dh tell the boss and they were very helpful.

[Cuddlydragon]

I'm sorry but I agree with your DP. I also really hope that you have a great deal of time before you need to deal with your DS health needs so intensively. Good luck.

[TitsalinaBumSquash]

There is no one unfortunately! No local friends or family that can reliably do school pick ups and childcare.

We have the local community nursing team that have volunteers that can occasionally help.
I bend over backwards to make sure DP has as little time off work as possible, even if it means 7-8 trips on the train/car per day with one or all 3 children.

We have searched high and low for a regular babysitter but have come up with nothing unfortunately.

DP's parents aren't very close in distance and don't drive, they have their own things to be dealing with without going into details.

My Mum is dead.
My dad is often away with work.

DS1 & 2's bio dad isn't willing to do anything that would help the situation. He'll have them both to stay over night but wouldn't do a hospital stay or anything and it still doesn't allow for DS3.

We manage at the moment and we always find a way though.

[pinkdelight]

I agree with your dh. Now is not the time to bring it up. When he's a permanent employee and when the situation arises, then he can get the flexibility. Now it can only weaken his negotiating position and frankly it is none of their business right now.

[saffronwblue]

You both sound like lovely parents to your DS. It must be very hard planning for an uncertain future.

[ATruthUniversallyAcknowledged]

It's obviously a period of massive change for you op, but I think this permanent role sounds great. Dp is clearly confident that he's working for a good company.I hope it all works out.

[sooperdooper]

I agree with your DP, his employer doesn't need to know right now, it's not relevant to his contract and he's under no obligation to disclose personal family medical history on the basis it might be relevant in the future.

Once he's got the permanent contract agreed, and as and when he needs flexibility etc he can discuss it with them, but I don't think he should right now, it's not any of their business

[JoinYourPlayfellows]

This is his decision. It's his job, his employer, his career.

He needs to make his own call about what is the best course of action in this situation.

My cousin has CF (in his 30s, employed) and he operates on a strict "need to know" basis when it comes to telling people in these kinds of situations.

I don't think you raise this kind of thing during these kinds of negotiations - particularly when they are about things that are likely to happen in the future and not things that are happening right now.

"He is 9 now and at the point where it is likely to start going down hill at a more noticeable rate"

:(

I wish you and your son all the best, and I hope things don't go downhill as quickly as you fear.

[deXavia]

I presume this issue has come up before over the course of 2 years - how has it been handled then? Did he ever mention to his immediate line managers then that your DS has cystic fibrosis? I guess what I mean is don't be surprised if they don't already know - and therefore aren't worried about it. Someone who worked for me had a severely disabled adult son, occasionally we'd have to work out alternatives to help out with care or problems at home. We never made a big thing about it but over time people were aware and naturally accommodated.

[TitsalinaBumSquash]

I don't think they would, but as I say I have no experience of the industry! DP has so I'll trust him to do what is best. They've never had a problem so far when one of them has been really poorly or in hospital.

This is the first time DP will be in permanent employment over contracting and with DS's hospital trips getting more and more frequent as he gets older, I'm trying to process everything in my head.

I do really appreciate the opinions of everyone and that fact that no one a has flamed me!

[ATruthUniversallyAcknowledged]

Also, depending on the job, do you need to put some potential alternatives in place too? Reliable babysitter/childminder? Local friends on standby to do school pick ups? I hope this doesn't sound insensitive but there may be times when he really does need to be in work and i think an employer could reasonably expect you to have built in extra support at home as well as relying on dp working from home.