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?

[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]

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.

[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.

[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?

[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.

[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.

[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

[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.