husband's rejection of child with down's

[blinks]

Bit of a long un...

I'm writing this on behalf of my sister in law who is having some difficulties coping with her DH's attitude towards their 6 months baby boy who has Downs.

The pregnancy was unplanned and pretty much unwanted by him up until they found out the gender (they already have a girl). He was born in a dramatic emergency manner and found to have Down's straight away along with heart problems and some other issues relating to his condition... after an operation and much to-ing and fro-ing, he is very much on the mend and is a beautiful wee boy, very much loved by all. His dad however has the attitude that SIL 'wanted him so she'll have to just get on with it' and generally opts out of much of his care. He is unwilling and needs pushing into being with him. He's never given him a bath, for example. He does some of the care-giving though as he is still partially tube fed, but he is begrudging and not making an effort to bond.

My SIL is finding it pretty hard going as she has not only to cope with a small baby and DD1, but has to do it with very little support, emotionally and effort-wise from him.

He is also withdrawn from alot of the family and he and my DH (they are brothers) are not speaking due to some separate family issues. He has suffered from depression for quite a long time and is on medication but it doesn't seem to be working. He won't ask his GP to change the prescription though according to SIL. She has mentioned counselling to deal with his non-acceptance of his son but he seems unwilling and is generally non-responsive.

She needs advise about where to go from here. Not having been through this so I feel I have little wisdom to offer.

Oh gosh, your poor SIL, she must be feeling so sad that her DH isn't bonding with her darling son.

It does really sound that the dad needs supportive help and someone to talk to. Is there anyone in the family that he's close to that he might open up to?

All I can really think to say that it's good that he is doing some care-giving and that she should build slowly n that.

What was he like as a dad to his first born when she was a baby? Some people just find newborns hard work and take a while to bond. The fact that he has SN's may just be adding to that and making the bonding even more hard. But not impossible.

How is your SIL in regards to her coming to terms with her son having DS?

PS - Our eldest DD, Charlotte, has Down's syndrome.

What societies has she joined? she may find the local carers association very helpful and supportive.

A lot of us parents feel we are to blame for having a child with disabilites and he may feel guilt ridden at his feelings. It can turn you into a very selfish person sadly.

Really feel for your SIL. She must feel overwhelmed sometimes. You sound like a lovely supportive person, has she other family members to help?

Your poor SIL. I remember when my ds was dx with AS, it took my dh over a year to finally accept the dx.

thanks so much everyone-

She hasn't yet joined any organisations but has made moves to meet up with other mums who have children with Down's. Are there any forums/groups which deal specifically with Down's?

BIL's family aren't exactly the sharing kind unfortunately...my DH is very willing to talk through any issues/problems but BIL isn't speaking to him. Other BIL has tried to gently press him to open up but is on the verge of giving up as he has rejected it every time.

I think SIL is worried about pushing him into counselling or going to GP in case it pushes him even further away.

SIL has come to terms with her son having Down's and has really just got on with it. She needs his support though and both their children could do with having a more 'present' father.

He was hands on, delighted dad to DC1 but SIL feels he would be rejecting to any second child, Down's or not. I think the Down's is an issue though as he was much more cheerful about the prospect when they found out it was a boy at a scan.

Candlewax- could you expand on your DH having a hard time accepting your DS's dx?

Thomcat- how did you and your DH cope initially? Did you get any professional support?

The DSA might be a help.

TBH - both my husband and I had a day or 2 of tears and shock etc, nd then we pretty much just fell in love and got on with being parents. There were a few tears but not many after day 1 & 2. She was just our little girl. He's not a real baby person but he didn't have a problem with her having DS. I think if anything it made us love her more, feel more protective over her etc.

Not saying it was all always easy but .....

I know it's not always easy Thomcat but it sounds like your daughter is a lucky girl...

I just see him as my gorgeous nephew but I can't say for sure that I would cope well if I was in their place, so I'm trying not to be too judgmental about his behaviour/attitude. In saying that, the apathy and rejection has to have an expiration date though, doesn't it? I can't see her putting up with it forever.

I think it's three things- depression, the Down's Syndrome and the fact that he didn't want another child... combined it seems insurmountable. SIL says she doesn't think he's actually leave though which leaves them in a bit of a state of limbo.

Wish I had a magic wand!

I was wondering the same as Fio. Then she's not sort of putting the burden on him, in a 'I think there's something wrong with you' way, but more accepting that this may be a bit of a shock to both of them and they need to deal with it together.

hi blinks, there is an email list for UK parents of children with DS:

DS-UK discussion list

Based in the UK. Provides informal support, discussion and information for parents and professionals caring for individuals with Down syndrome.

To subscribe to the DS-UK discussion list go to:

listserv.down-syndrome.net/archives/ds-uk.html

Or send an e-mail to: [email protected] with the phrase 'subscribe DS-UK' in the body of the message.

It's a nice group. :-)

Unfortunately there are other mums on there whose husbands rejected the baby - maybe it would help her to hear how they got through it/moved on.

Our experience was very much like TC's btw - of course we were sad and shocked as it was out of the blue, but it was mainly a feeling of overwhelming protectiveness and love. Dh cried, but he cried for dd2 and how different/difficult he perceived her life to be, not for himself IYSWIM.

Hi binks - my DD3 has DS. Your poor SIL has a lot on her plate and I can empathise. My exH thankfully bonded immediately with DD3 and she is very much a Daddy's girl. Sadly we separated when she was 3, but she still has lots of contact with him. He doesn't do much of the nuts and bolts of her care though - appointments, school choice, learning signing, etc are all left to me. But he is a loving Dad to all 3 of our girls.
I wonder if your BIL would bond more if he HAD to do more for his son. I think also, once this baby stage is past, and your nephew's character shows itself, then he will become a little chap in his own right, not just a baby with downs IYSWIM, and that may help things. I hate generalisations and I know all toddlers are endearing - but - for some reason children with Downs are particularly so. I may be flamed for that!! But I must stress this is my own experience, and I've never met a toddler with Downs that I couldn't have just eaten alive
Wishing you all the best your SIL is lucky to have you xx

I was thinking about this on the way to work today.

I think it would help her to know she is not alone, not only in having a child with DS, I don't mean that, but with having a partner who is having a hard time with it.

I also think she needs to work on the positives. He is doing some caring etc.

Hopefully yes the rejection thing will have an expiry date, yes. But like you say it's not going to be helped by the fact he suffers from depression and wasn't keen on having another child. I think he'll be ok, but it'll take time, and patience & support from others. He'll need to see everyone love & accept his son, which isn't going to be a hard task! A baby with Down's syndrome is a baby just like every other baby in the world. No difference. The differences are there but they won't show up till later in life and slowly, slowly, bit by bit. There is nothing that lands in your lap with a thump. You just all grow together and the differences grow with you.

One thing is for sure the rejection thing is unfortunatley pretty common. She / her husband are not alone. And it'll all be ok, whatever happens, however it turns out, it WILL all be ok.

Going to send you a couple of links in a bit that you might want to forward on to your SIL.

HeadGirl - I too hate generalisations but the endearling thing is just fact isn';t really, tbh!

Lottie may drive me insane sometimes with her stubborness etc but she still melts my heart in a way only she can and I've never, ever met anyone who wasn't endeared by her. People try not to have favourites with my chuildren, grandparents, best friends etc, but we all know that Charlotte is always going to have a very speicla place in everyones hearts, for all the right reasons

This is a great piece written by a father to a child with Down's syndrome I'm Not A Saint

FROM THE DSA website:

Many new parents go through a grief process as they would if their baby had died. The dream baby you imagined for nine months or more, the baby without Down?s syndrome, is not there.

But it is different because you still have a baby needing your love and care. So in addition to the grief for the loss of your dream baby, you develop feelings of love and joy for the actual baby. The baby who was the problem becomes the solution.

Grief is a healthy reaction to loss. The strength of your reaction depends on how big the loss seems to you.

Grief is hard work and it hurts. It can be delayed (maybe your baby is very sick and Down?s syndrome seems unimportant) but it cannot be avoided.

Throughout your child?s life there are likely to be times when you revisit these feelings of grief and sadness but most parents say the pain of the early days is the hardest.

Our experiences show that there are many different feelings associated with the grieving process.

Denial is a common first reaction, you hear the news and think, ?this isn?t really happening? ?this only happens to other people?.

It cushions the blow and protects you for a while until your body is better able to cope with the news.

Anger may be generalised rage at the world or a more personal ?Why me?? ?How dare this happen to me?? You may be able to channel your anger into doing something to help your child.

Bargaining is that feeling of ?If I do this I can make it better?, a time where guilt and responsibility may be strongly felt. It may lead to a change in priorities in your life.

Depression is an intense and overwhelming feeling of helplessness and sadness, ?My world is falling apart.?

Acceptance creeps in as you start to think, ?So my baby has Down?s syndrome, I can live with that.?

Most people don?t work through these feelings in order. They may experience them all at once and revisit them time and time again. Your partner may well react differently to you.

Looking After Yourselves

Your own health is vitally important. Any birth brings with it a complicated mixture of physical and emotional reactions. In addition to experiencing all of these, you are also coming to terms with your new baby with Down?s syndrome.

Expect good days and bad days.

Let yourself cry if you need to.

Rest ? You need rest like all new parents who have just had a baby.

Spoil yourself ? Enjoy your favourite treats.

Get information ? Fear of the unknown may make things harder, ask questions, BUT only read information that helps you, don?t get overwhelmed.

Allow yourself time to heal ? Your feelings will change, things will get easier.

Get to know your baby ? Cuddle your baby, breast feed, take photos.

Take time out ? Visit somewhere peaceful or just forget about Down?s syndrome for a while.

Talk to another parent ? The DSA can give you information about your local parent support group. Picking up the phone that first time can be very hard, but it really helps to talk to someone else who?s been through it.

Ignore unhelpful comments ? Even if they?re from people close to you!

definitely can't generalise, the poor dad is obviously stuck @ the grieving point, with no sign of him being able to move on he (and the rest of the family) definitely needs help, i hope he can get it, xxx

And I'll wheel out the old Welcome to Holland poem in case you or ypur SIL have not come accross it.

It was written by a mother whose son has DS and pretty much sums up for all parents of SN's out there their feelings (although some go on to experience life in Beirut too).

Welcome To Holland

I'm sorry, must be a really hard time for you and your sil right now. I've seen this happen in another family (baby ended up in care) and hope things sort themevses out better.

I remember when I went to the GP comlaining of depression after my 3rd child was registered as sn (the second sn child for me in a year).
The GP told me then that meds wouldn't work: I wasn't depressed because of an illness, I was depressed because it would be pretty ridiculous not to be! At the time I was , a year or so on and I agree wholeheartedly.

Dh is a different kettle of fish though; He has had recurrent severe depression for years, most severe around ds3's birth, but significant bouts after both dx's. He only went abck from a 5 week spell last week actually.

It does take meds for him to cope, but it has taken a lot of trial and error to locate the right meds for him (citalopram). I think he also needs conselling for the PTSD I think he ahs suffered with the boys but as a depressive anyway its generally written off as just another bout iyswim.

His repsonse is pretty typical depression anyhow, so I wouldnt worry about that; your SIL coulde asly ring GP with her concerns- even if he wont discuss case with her (he wont) he can still listen and note iyswim. I've done this in the past.

'It was written by a mother whose son has DS and pretty much sums up for all parents of SN's out there their feelings (although some go on to experience life in Beirut too).'

Beirut?? friggin mid-conflict Afghanistan here mate

A mother btw of a severely Autistic non-verbal little boy once told me that for afthers it was worse if it was their son; I don't now if this is always the case (doubt it mchly) but I think it does apply to some fathers. Long term she might be able to build on typical father- son activities (eg fottie- there are sn clubs if MS doesn't suit but it may well) and lego, but right now the depression is the obvious issue.

I would say- sorry, going on- that it is always hard to live with a partner who has deopression. She mustn't think its the baby- he'd have linked it to something else whatever and it is anything but personal. She cant change his illness 9and ultiamtely it really is that) but should remember that she needs to be able to cope and depression can be 'catching' for partners. I class myself not as a mum- carer of 2 sn boys (and mum of 2 nt ones) but as carer of 3- I very much include my dh in that, its very different to being a wife of a non-depressed eprson, just a good job I love him so much really!

BTW - I only mentioned Beirut as there is a poem entitled Welcome to Beirut, all about having a child with Autism.

Haven't come across that one; will look on Google- think I may identify (don't know whether to pmsl or sob!!)

Here you go

Thanks TC.

Wow- that all sounds familiar I'd argue that you don't start with teh dx but when you recognise issues (DS3 still is missing a dx although we all know the score) but other than that- pretty damn accurate!