to be angry about my BF's attitude to the idea of having a child with special needs

[BigBeeristheBigBeer]

My DD2 has special needs.

My BF and I were discussing broodiness earlier and I said I was keen to have a third baby.

She said she was not so sure, as she had two perfect children already, and what if she had a disabled child - then she would have ruined her life and the lives of the existing family members.

I found this hugely offensive as my DD2 is most beautiful child, with a sunny nature and huge potential. She has by no means ruined my life, she has enhanced it immeasurably!

I am seething as I can't believe she could be so insensitive.

(But I do think it's kind of crass to say to a friend who has a SN child that you 'couldn't' cope in the way the OPs friend has.)

so you say it on here instead
whata weird outlook
what if you become disabeld, does your dp/dh/ds have a get out of home free card?

No, I said I wouldn't want to cope, not that I couldn't cope. But that obviously having made a choice to have a child, I run the risk of maybe having to cope. The same choice I made to get married, if my DH became injured in some way I would have to cope. But the knowledge that that risk is there, does scare me. I'd be dishonest if I said it didn't.

Fio - Most children with SN with love, care and support from parents do grow up to live independent lives in the community. But some don't.

Is it not permissible to have these fears? I know that my fears are other people's realities, but does that mean I'm not allowed to say I wouldn't want to live that?

Maybe I'm thinking of it because if I didn't come from a large family, I wouldn't feel that I could be here in the UK.

My parents are ill, and need assistance. If my brother and sister didn't live near them then I would feel obliged to go back so that I could help, but I LOVE living here, and would hate to go back 'home' to live (not to mention what it would do to my DH's career). But I would do it if there were no alternatives.

And as I said earlier - we have been working out our wills, and that does tend to make you think of worst case scenarios (am pregnant at the moment, had a mc last time so too scared to feel too hopeful).

My DS2 will never ever be independent. Quite what his long term future is remains currently unclear.

We have already impressed upon his two siblings that whilst we must of course pass responsibility for his care on to them when we die, that does not for a moment mean that they care for him in their homes.
However limited his abilities I feel very strongly that my DS2 will be happier amongst his peers than living with his brother or sister.
The funny thing is that whilst I say that to them eldest DS1 just purses his lips and says 'well it will be up to me won't it'

I want him to understand that his choices for his brothers care require that all three of them have their needs met - not just DS2.

But tbh I find the talk of 'if it were to happen to me I would feel x' pretty nonsensical because it is one of those things in life that you do not even scratch the surface of understanding unless you experience it.
And when it does happen you find that the care your child requires is something you give unthinkingly.There is no debate in my mind any more than if my other child needs a hug or a drink or anything else. To care or not to care is not a debate that any of us ever have I think.

And can I finally say there is still a distinct ack of people denying my claim to be a twat

Thanks Fio - hoping to get an early scan to help allay some of the worries.

Thank you Jammi - I think you clarified what I meant. Not easy to make a comment on a thread like this without sounding insensitive. And yes - I am also an older mum, so had all those 'statistics' to take into consideration.

I agree with MadMarge and Jammi.

As a 36 year old, with two children, a dh with a severly disabled sister, and from the persepctive that I have just had to do as MadMarge fear: Move my family away from London (that I loved living in) to look after elderly, ill and disabled parents in Norway, this IS a serious concern and what at the end of the day makes me think twice about TTC nr 3.

I do not want to have to cope with an sn child in all this. We have a MIL who cant bring her dd to visit, due to her disabilities. It is my choice, and it is a serious deliberation I think most responsible parents should think through. It doesnt make me uninformed, it doesnt make me crass or insensitive, and if I had a friend with a SN child, I would in fact consider her my first port of call in my deliberations. It only means I have seen first hand how somebodys life CAN be pretty much ruined, or at least a lot worse then expected.

If my dh, or my kids should have accidents that meant they got disability, I will of course have to cope. I will look at my mum for inspiration, as she has taken on caring for her paralyzed husband, rather than institutionalizing him, despite having terminal cancer, and despite having no support at the time.

But I think such a discussion is rather pointless without bearing in mind degrees of disabilities, and this is where it can really become crass, hurtful, or judgemental. How do you decide "what degree of disability" you can erm... cope with?

I should add. My BIL is a lot younger than my dh. He lost out on a lot of schooling as he had to care for his sister, and got CRAP grades. In their family, the situation with SIL drove FIL down the alcoholism route, and with a drunk as a father, and a mother who had to work two shifts to make ends meet, this young boy was nearly forgotten, always taking second place, never really having his needs seen to. MIL was exhausted and did her best, and it was so easy to ask her teenage son to be with his sister. He left home really resentful of his parents.

When DH and I decided to try for DC3 I was 40.
I already had one child with a severe disability and adding into that my age I was aware that I was of a higher risk than most.

FWIW the result of my long discussions with DH was that we both agreed that ( knowing what we knew) the question was only about did we choose to cope with more.

There are no statistical factors etc to consider. There is always the chance that your child will have issues. As we learnt with DS2 - a child can be perfectly average until 20 months so no testing or 'choices' are necessarily available.

So, for me, any pregnancy includes the prospect of a child having or developing some kind of disability . So thats the deal.

Had I believed that we did not want or were not prepared to cope with an SN child again then I would not have tried for another baby.
Obviously part of that criteria was my eldest son who could have ended up with two disabled siblings. We still decided to proceed because (- in both my opinion and FWIW in his) my DS1 has gained more from having a disabled brother than he has lost.
I know that is not true for everyone but it is true for my son and my family.

As it is DD has no issues and we have managed to swerve her brothers ASD having applied what we learnt with DS2

I would be horrified if ds2 or ds3 felt they had to take care of ds1. That would incredibly selfish of me. I expect them to go to Australia and sit on the beach/do unsuitable things, not spend their days caring for an adult with severe learning difficulties and profound autism.

Anyway caring for ds1 is not a 1 person job. Far better for him that he accesses decent provision and get the opportunity to do things like moor walking, surfing, climbing and continue his education and learn to become as independent as possible. With the best will in the world one person cannot do that.

I expect ds2 and ds3 to look out for him, but not look after him. By look out I mean make sure that if SS try to move him somewhere inappropriate they block it. I think it would incredibly selfish to expect siblings to look after their brother/sister with SN. If they want to do it so be it, (although I strongly suspect an adult ds1 could get better care and education elsewhere with a team of people who get time off).

And actually you have no choice about the level of disability you have to deal with. DS1 was perfectly normal for a good couple of years. As normal as that toddler you know and love. Aged 9 he is one of the most disabled children I know (in terms of learning disability/ability to access the world- physically he has no problems). He will require 1:1 24 hour care for the rest of his life.

What was I to do at 2 say 'oh whoops no don't want this one, think I'll send it back'. He's in a class load of kids like that. He's in an SLD/PMLD school where I have yet to meet a parent who had a 'choice' (other than the Julia Hollander one and not many see that as an option).

jammi's friend sounds like she needs counselling. I rarely judge anyone, but I do judge parents of kids with SN who refuse to allow their child to develop independence. If you go into well run special schools you find that is what education is about. That is where children with SN get identity and self esteem. To keep the child helpless needlessly is - and I very rarely say this- utterly wrong.

If i ever try and keep ds1 close to me as an adult and don't let him move on and have his life someone take me outside and shoot me please.

Oh I can see what you are saying, but she's playing a risky game that the siblings will grow up resentful. As a parent of a child with SN you do have to work harder to ensure that life is fair for all, but I can honestly say that ds2 and ds3 do not seem to be at all negatively affected. They're both doing well in school (school always talk about how well adjusted and pleasant they are), we do make sure they get their own activities and they love their brother.

The 'I have to think about the other children' is always an odd one for me because when I think about our family I can say the child who is most likely to have missed out on things from having siblings is ds1. Although there are plenty of positives too, he's the one who experiences the real negative effects of having siblings. Not ds2 or ds3.

oh dear when I had dd, I didn't even consider ds. I knew he wouldn't want a sibling at that time(he was 3)
sn never came into it.
oh but cp is one of those supposdly unpreventable disabilities that only ever happens to other people.
H eis a16 now and adores his sister.
no way will he look after her full time at any time That is why we lucky parents have the "option" of residential care.