To think that Julia Hollander who put her severely brain damaged daughter into care did the right thing

[pigletmania]

I have just picked up this weeks Pick Me Up magazine and have read the brave story of a woman Called Julia Hollander and her husband who put their daughter Imeogen who has severe brain damage into care as they could not cope. The daughter is now thriving and doing so well in the care of Tania a professional carer. They are still a part of their daughters life and are involved in decision making regarding aspects of her life.

When this couple spoke out about their story they recieved a lot of bad press and was unfairly vilified by people on Mumsnet who if they have not been in that situation have no idea what this couple are going through. They put their daughter into Tanias care so that she would have a better life, this in itself is very selfless and putting their daughter first.

tribeleader Sat 24-Oct-09 21:25:39 Add message | Report | Contact poster

"And why shouldn't she write about it?"

Well, for one thing, because her other children will read it, even if Immie never can. And then they will know that they are being brought up by parents who seriously considered murdering a brain damaged child. That should make them feel really safe, in case they ever have an accident, shouldn't it?

They will also read that the youngest child is everything they had hoped that Immie would be. And they will wonder what their Mum will write about them, if they ever fail to come up to scratch...

Yes, she could have written a book. But not that book.

And before you wonder why I'm just focussing on the other children as if they mattered more than Immie- no, they do not. But other posters have already made Immie's case. Though I have to say that I find her lack of concern for Immie's privacy deeply shocking. It's as if she isn't a real person at all, just the sum total of Julia Hollander's misfortunes.

'errr, whats wrong with brain damage?'

Guessing here but I was once flamed for writing 'Down Syndrome man' so possibly, 'child with brain damage' would be more acceptable? English is so inconsistent anyway...earlier, I wrote, 'wounded soldiers' - using the new logic, that perhaps should be recast as, 'soldiers with wounds' ??

I take offence at someone plucking a phrase out of a large base of phrases and then using that phrase just to shock, especially when the person involved has no experience of disability

There are very few people that have the experience of knowing that a baby has an injury so severe at the crucial bonding stage. By 5 months old, it was clear how affected Imogen was. I don't think, just because we accepted and cope that we should expect all parents to be able to.

I don't see a problem in writing about it. The siblings will grow up with a clear insight into disability as they are still part of their sisters life. I don't think it's a bad thing they understand the whys and hows and what that lead their parents. Mine know the ins and the outs of what I went through, written down doesn't make the actions different

And again, no one has been abandoned, the family are still a big part of Imogen's life, it is just a different living arrangement to what most of us are used to

the living arrangement now is not an abandonment - what she did then was. And had the choice been immie at home full time or in care with no contact then I think we can guess what the choice would have been. She didn't leave her child having sorted some brilliant arrangement she left her. The praise for the arrangement goes (surprisingly) to social services.

If people can't cope they can't cope. If that non coping is tied into an inability to accept that they too can give birth to a disabled child I do this . let's face it jh's story isn't one of being worn down after years of caring - she didn't do it- and we shouldn't insult those in that position by pretending it is the same. Yes she has a story to tell but for me it's about coming to terms with not having the perfect baby some seem to think they are entitled to. Or not coming to terms with it. I feel sorry for her that she wasn't able to deal with her crisis except in the way she did. But I draw the line at calling her brave and I hate that so many think hers is a typical response. Reactions to disability are usually complex and take time and I hate the way she suggests that we all want an arrangement like hers. My son will go into state care at some stage but hell will freeze over before he enters a foster arrangement. (he has a family - doesn't need another one).

I have very little knowledge of JH (and her dh), I haven't read her books or any magazine articles, just what I've read on threads such as these.

Could it be that this woman's response to disability is just an, albeit outdated, way of dealing with disability? I was chatting to one of our neighbours a couple of years ago and she asked about ds...I updated her on ds's situation and that he was at special school, etc....she hadn't known (cos he looks 'normal' to the casual observer) but she then revealed that her older brother was dx with some major problems when he was about 2yrs old (can't recall what now but think they were mainly mental impairments). Her parents were advised to put this boy into an institution...neighbour told me that her parents thus paid for her db to live in a private institution from the age of 2yrs, after which he moved into State provided care at 5yrs old. She breezily added, 'oh, we used to visit him' - which did strike me as a little odd but also that it was a comment, and indeed an attitude, that was firmly of its time (circa 1950s). Maybe JH, or her dh, was/were brought up with this attitude. Not making excuses here by any means.

...and neighbour's parents were also concerned about how their ds's disability would impact on his sister's development (i.e. my neighbour's) - which again, is an outmoded attitude from the past (for the most part, I realise that siblings can still be removed from families if there is a risk of harm to other siblings).

It's relatively new that parents who have a disabled child are left to get on with it. Disability awareness means we now understand more and do more but that comes with a price

It was the norm for our children to be sent to specialised homes or schools and there were more of them catering for many different needs. Whilst it is in the childs best interests to be raised in it's home with it's family, the funding for help is just not available. Having to bed for basics like ramps in the house or downstairs bathroom is normal, to fight for a statement for school is normal, to fight for respite/outside help is normal. It's draining, humiliating and it hurts

To say at 5 months you can't do it, I don't have a problem with, at what point is it acceptable to admit it's too hard? 1 year? 5 years? 50 years? I know people that have part time foster care arrangement, its the respite they have chosen, why is that seen as more acceptable?

I don't get the anger I'm seeing

No it was not the norm. If you look back through history the disabled have been treated differently depending on the time -it was the norm in the 1950's but it was also the norm then to remove babies to nursery after birth and for children in hospital to be visited once a week for one hour by their parents.

Interesting suggestion manny - and from the things julia herself has written there did seem to be a lot of family pressure suggesting that very disabled children are better off dead. It wasn't lost on me that to keep immie she would have had to have stood up to her parents as well as her husband. I think that can be harder than standing up to society at large.

Too true that parents have to fight for every bit of help. Also true that a child's interests are best served by being raised within its family.

The feeling I get from the JH saga is that their dd was placed outside the family because they just didn't want to be bothered with all the problems that she brought upon them. It sounds as though they do still play a part in their dd's upbringing but they just didn't want the full-time responsibility of dealing with all her problems. The articles about the 'brave decision' belong in the 1950s when that was the expected course of action.

As for how long is 'acceptable' to care for somebody before admitting defeat...well, I think the 'rules' for this are different when it's a child involved than when it's a 60yr old adult who has developed Alzheimer's disease.

Riven, yes I wanted to add that too...when my ds was about 2-3yrs old, he was a complete handful. I had no outside help, dh worked long hours and ds would not play, needed to be kept active for hours on end (even in the rain, snow, etc) and could not be trusted for a moment (OK, this hasn't changed much but he is slightly less erratic than he was back then ). I was exhausted and I'd had enough. I honestly do not know whether I'd have been able to keep going, had I been a lone parent. I was ready to give him away , it was that bad. However, my dh is a fab parent and shouldered a lot of the work. He keep us all going until things improved. His sense of responsibility kept me going too.

My point is that in my darkest moments, when I used to fantasise about running away, getting on a plane and legging it, I would be brought up short by a tremendous sense of shame and failure...bravery didn't come into it.

I'm sorry Tribeleader, but why don't you just see what some of the people here are trying to say? There have been some very sensitive posts explaining that it's not the ambivalence, it's not the awful feelings, it's not even necessarily the abandoning of Immie that people are upset by... (But I will stop here as all this has been said before, much better than I could say it).

I do think though, reading this thread, that there are 2 separate issues that are getting a bit conflated (and I for one am a bit confused about what most of us think):

-is it that we dislike / disagree with / are angry with JH's decision to abandon her child? (and her DH's decision, btw, we shouldn't just be focusing on JH)
-or is it that JH is not particularly....eeerrrmmm, how shall I say it, contrite enough or guilty enough or nice enough or something?

Because I don't think it should be for us to judge what kind of person JH is. There are wonderful people & then there are people we dislike, but sometimes good or less good (don't want to say bad) actions don't necessarily coincide with who's nice & who's less nice.

Personally I dislike the fact that she exploited the whole thing (and sorry, to me it seems like exploitation). And yes I admit that from what I've read I don't particularly like her (for all sorts of reasons, more or less what Hoppity wrote before). But if I'm honest I can't say I have an opinion as to whether she should have abandoned Immie or not. It's not just that I haven't been in her position. It's also that we need to be open for the possibility of various different outcomes being the right ones for particular families...

But one last thing. And this is a response to Tania. I really don't believe someone has to be in the exact same position in order to have an opinion or to be able to imagine someone else's situation. Also, as others said, unfortunately when someone goes public with their story they're bound to get varied responses. However, I do accept that at times this thread has been slightly vitriolic...

The lack of a clearly defined plan of what the parents were going to do with their dd is what, I think, galls a bit, such that very little care and thought appeared to go into where Imogen would 'end up', once her parents had made their decision to quit. In the 'olden days', I guess they would've had a tour of a few institutions and chosen the one best suited to their dd's needs, but as we know, such places don't exist anymore, just the amorphous 'State'. It could be that parents don't have much, or any, influence in deciding who fosters their dc anyway so this analysis may be a bit unfair.

Also the rather incongruous view of the parents that rescinding responsibility of their dd was somehow 'brave' is also at odds with how other parents view the situation. i.e. I doubt very much that I would feel brave if I put my ds into State care. It's an odd choice of word to describe a complex situation.

The posters who have suggested that JH has an outmoded view of disability are wrong to suggest that society has moved on greatly. The medical profession once encouraged parents to put their disabled children into institutions rather than 'taint' the family. They now encourage testing and abortion as a way of getting rid. Nothing has changed except the methods of removal.

Agree with both manny and donkey. But medics have never been ones to deal with learning disabilities and for me the saddest thing in the whole story, the thing that screams out as being wong was the negativity of the doctors. The lack of understanding from the doctors of the value of people with learning disabilities. We had some if this and it pushed me into the work I now do.

I can't link as I'm on the iPod but there's a very honest and moving piece about disability in today's observer from a mum who gave birth to twins at 23 weeks. She captured the complexity of disability in a way that julia doesn't.

I'm not really angry with julia for her choices. I feel sad fir her. She has more or less said that she wanted immie and to be her carer but her husband didn't . I can't imagine being in that situation. And I think she has sacrificed a lot for her husband. The happy ending for immie makes julia the victim in my book.

Bit but but I do get frustrated with her message about disability being so awful and the lapping up by the media of it all makes me cross. Can no- one see the value in our children? How sad if so.

On another note I saw tania described in an article as a 'professional carer' as if julia had bought in someone better prepared out of kindness. What's a professional
carer then? I don't think for a moment that julia was responsible for that term but it's that sort of framing by the media that makes me mad rather than the sad story of a mother without the strength to cope with the idea of disability.I wish she'd given herself a chance - she might have surprised herself.

The mother's story ? a tragic tale of premature twins

Here is the link from the Observer as mentioned in the last post...off to read it.

I meant that society's attitudes have changed towards the care of children with disabilities in that it's now recognised that the best place is within the family, not an institution. Attitudes towards testing and screening have accelerated but this is a separate issue because there is not a live child in the world that people are discussing and the legal ramifications are different (not justifying, just stating fact). Prejudice is alive and well in ante-natal clinics but that goes back to the fear of disability, not wanting to understand it, learn about it, be close to it, et cetera, et cetera, et cetera

I don't know enough about JH's situation to comment but I do know that the parents of one of the kids that we foster was at breaking point and considering putting him into care.
Fortunately a middle ground has been found and he comes to us for respite weekends, giving the family a chance to refresh and regroup as it were.

Looking at it another way I once rpresented a woman who was disabled and who had three kids, two non-disabled and one disabled. She couldn't really look after any if them properly ( not so much due to her own disability, though that didn't help, but due to her own upbringing in an institution which had left her emotionally bereft and unable to consider anyone before herself - a survival instinct if you will) but the disabled child was really suffering.

The Mum fought tooth and nail to keep her, but ultimately a lovely foster family was found and the little girl wanted to be with them. The Mum did finally agree. I do think that was selfless actually, because it went completely against what she wanted herself.

Thank you very much to everyone who has posted on here.A special thanks for Babieseverywhere for the link.Just reading the threads has left me feeling very drained.
We WERE JH and her DH Jay when our son was born over 20 years ago,the circumstances were very similar.In some respects our circumstances were much harder.I am intrigued by this notion of the cliche of put your baby in an institution and forget about him/her,spoken by the consultant.Has this ever been true?To my mind it is a total myth.
I feel it is tragic that JH and her dh were not given enough support at a critical time.
We muddled through,without anything like the respite we needed.I also worked full-time and finding support was a nightmare,eg when there was a meeting or when he was ill.
We are still muddling on,our health shot to pieces,financial problems.
But every day I thank God I kept my son.
The profoundly brain damaged baby became in my dhs eyes the love of his Life.It isnt something that can happen overnight,the shock and disappointment to some is too great.
In this respect I feel very sorry for jh and her dh,and their other children.Sometimes it takes years to realise that something very beautiful can come out of something very bleak.

My close friends have a dd who appeared fine till age3 then began constant fitting and eventually had a brain op to reduce the number of seizures.At 7 they were offered a place in a weekly boarding school which they accepted.M came home Friday pm and went back Monday am.She was and is much loved-a specialised environment has helped her to grow and mature.She is now 36 and lives in a house with carers and a group of SN adults like herself.Every Friday she goes home to her parents for the weekend,she was able to be her sister's bridesmaid[with help from her carers].She loves to do jigsaws with her dad.If they had tried to keep her at home full time I think it would have been intolerable for all of them.She still needs constant care day and night and because it is split her parents can enjoy her still and she them.No need at all to give her up completely.

When I read this sentence, 'At 7 they were offered a place in a weekly boarding school...' I was like this then I read on and my shock instantly abated, 'She is now 36..'

It's great that your friend's dd had a really good education that brought out her potential. However, it is a completely different world now from 30yrs ago. Nothing is offered to parents and a boarding school place/respite care/adult services has to be fought for with tenacity and stamina, often at great expense to parents.

Although special schools do still exist (and my ds attends a very good one) they are often 'general' special schools, such that one size WILL fit all, regardless of disability.

Jardy - your post reminded me of something a wonderful consultant at GOSH told me in a case where SS were determined to remve a baby because the Mother had not bonded. The baby in question was profoundly disabled.

During an expert meeting the SW was wittering about how distant the Mother was, how she showed little affection etc.
The consultant gave a withwring smile and said 'of course. The Mother is still grieving for the child she has lost. Give her time.'

Five years on Mum and child are doing very well and there has been another addition to the family. Hearts take time to mend no?
One reason why parents should not make any rash decisions.