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.

oh first line should read A disabled child is a child first, not a disability. Just a child. And your feelings for them are no different.

There was a great newspaper article in the guardian or something a while ago, which made that point.

For me it wouldn't just be about choosing between my husband and my child, but between being supported and loved and not, between my children having their dad around and not. As you say, I would have to be in that situation before I could answer your questions for definite.

'...if anything you remain more protective as they grow...'

I agree.

Inmylittle - so you would leave your current children if your husband dishes out the ultimatum? If you find the idea of that abhorrent then you would feel the same about a disabled child- maybe more so because their vulnerability tends to bring out the lioness in mothers. That's my point - you don't feel differently just because a child is disabled- you may feel differently about any child if you haven't bonded. But there is nothing about disability alone which makes you suddenly choose your husband over your child. And if you think there is you are misunderstanding that a disabled child is a child to the parents first and foremost not a disabiliry. Of course some mothers choose partners over children - any children- but they're not usually applauded for that.

Tania is a specialist foster carer isnt she? so I imagine she has had all the right training etc and I have no doubt in my mind that once unloved child is now loved and happy and safe and secure. It is all any loving parent would want after their death. Trouble is JH or her dh didn't die and they don't particually come accross as having ever loved Imogen. More fool them. It may have given them insight into normal human nature, it could have taught them to be unselfish, it could have taught them to love unconditionally, to have empathy and sympathy. I feel it was very much a missed oppourtunity for character development on their part and I pity their other children.

It certainly seems like JH's daughter is far better off with someone who loves her, rather than her own biological parents.

If I ever got pregnant again, which is unlikely, I would have antenatal tests (although I've no idea what I'd do with the results - impossible to look into a crystal ball to that extent). But the idea of dumping a newborn baby is just horrific. Can't imagine ever doing that.

You can have all the antenatal tests in the world and still have a profoundly or severely (or moderately or mildly) disabled child. My friends son had a syndrome where he developed normally until he was almost 4 years old and then he regressed until his death where he could move nothing else but his eyes Her dh quickfooted it out of the house never to be seen again leaving her to cope with it. A young single mum who eventually got a nice damp and mouldy council bungalow and was brave enough to take it on the chin and get on with it. Eventually he did need 'professional care' (ie. a HOSPICE) but she showed bravery and humility throughout his short life and she has my upmost respect for it. Unlike some people who live a comfortable existence in leafy oxford, with professional careers but moan about how hard done to they were

I have read about half way up the thread. In answer to the poster who asked what people think about aborting disabled children, I agree with Riven in that it smacks of eugenics (sp?). I requested to have no scans done with my babies (certainly no tests!) and was told that I had to have at least one scan, so I agreed to that at 35 weeks. I knew I wouldn`T have aborted the baby anyway, so what would have been the point?

I have to say that it has been through reading the stories of women on mumsnet who have SN children that I have been made aware of what a joy SN children are- and that the parents see them no different to their other children. Whereas youD expect it to be the other way round: that reading about the reality of SN children would convince people they couldnT do it.

ANyway, I think that JH, whoever she is, probably is protesting too much. I was very at the comment about SN mothers not working, having holidays or social lives . I know those things are important but life runs a lot deeper than those things. There are deep wells of compassion and love and other emotions that are not recognized, and dont have a place, within our mad, consumerist societies. I was also moved by Rivens comment that her SN daughter has improved the lives of her other children. When you think about it, of course it would. Kids would learn about whats important, and probably gain a perspective about life that they couldn`T have had otherwise.

jardy I personally know at least 3 sets of parents who had a child with down syndrome who were told to leave the child at the hospital and to go away and have other children - forgetting about the child with down syndrome. Those words were spoken by medical professionals. SO it is true and it has happened and some of those stories are not 40 yrs ago - one was less than 10 yrs ago.

eidsvold to hear that.
JH says in her Pick Me up article that she assumed other mums with disabled children would know that foster care is an option.As if it is as easy as that,as if there is an army of Tania`s out there who took over as she did.She also says that it takes an extraordinary woman to care for Immie,which is not her.No mum of a profoundly disabled baby needs to be extraordinary.You just keep putting one foot in front of the other and get on with it.Her younger daughter would have benefitted.My son has not RUINED my Life,he has MADE my LIFE.

Manny you said: 'At the most basic of levels, a disabled baby was not what the family wanted'.

Can I ask: do you say this as a criticism or as a fact? Because I would imagine none of us would initially want to have a child with a disability. Especially a very severe disability like Imogen has which gives her a much less wide range of possibilities in life, and very little possibility of autonomy. LOts of disabilities also contain the possibility of early death. I wouldn't want that if I could choose. Is that problematic of me? Or are you just stating a fact?

Look, I haven't had personal first hand experience of SN but I have had knowledge from 3 families very close to me. It depends on the disability too, I think. I think there's a world of difference between a severe disability such as Imogen's and a SN such as autism (even severe autism). From what I've seen in these 3 families I'm close to, there's a mourning process that the whole family has to go through. This is normal & understandable & takes time. IMO it is not eugenics or problematic at all to want your child to be as healthy as possible. I do agree with what the others have said though, from seeing these families through the years- and from the way I see their children. They are just that, children. And much loved children. They are not 'a disability'. In fact, I would agree with what the others have said (who have more experience than me)- parents of children with SN or disabilities tend to be even more protective of those particular children. Which makes complete sense to me.

Sakura, I'm really surprised & dismayed by your post. You say 'certainly no tests!' as if having antenatal tests & scans is something to be dismissed. You know, people don't have tests & scans in order to be able to abort!! They have them for all sorts of reasons. Medical information about how the pregnancy's going, does that ring a bell? The possibility of intervening if something is not going well? Knowing the cause of a bleeding (for example)? Finding out the sex of the baby? (or do you dismiss that too)? All these reasons among others are why people do tests & scans- including, I accept, to find out about some disabilities. But as has been noted again & again in this thread, loads of disabilities (the majority actually) are not scannable!!

Also, if I am to be a bit cheeky here, I think it's a bit 'putting-the-head-in-the-sand' not wanting to know & not having any scans / tests. In a way, the decision not to abort becomes only real if you have the relevant info. If you don't know you're just (in my mind) keeping your fingers crossed & going along with the fact that things will most likely go the other way (i.e. no disability). I'll turn the whole thing on its head: if you've chosen not to abort anyway & you're sure about that, what's the harm in doing the tests/scans for all the other reasons people do them?

Maria saying it as a fact. They were more than happy to keep, love and raise their 'normal' children. Shows a distinction. Not quite sure why this is so hard for you to grasp.

And how on earth could you possibly know whether or not there is a 'world of difference' between one type of severe disability and another? Are you suggesting that 'severe' disability comes in different flavours? What an inane comment to make.

'Also, if I am to be a bit cheeky here, I think it's a bit 'putting-the-head-in-the-sand' not wanting to know & not having any scans / tests...'

Your ignorance is amazing. A close friend of mine has a very disabled ds and NT kids too (two of whom were born after the disabled child). She had no tests done with any of her pregnancies, just simple dating scans. They are a religious family and would not destroy life (her words), so no point in having any tests done. But using your logic, she was 'sticking her head in the sand' eh?

My comments are inane? My ignorance is amazing? Okaaaaaaaay.

why do people think a severely disabled child is not "healthy" my dd is healthy

What I don't understand about this whole business is this - I think I love my son MORE fiercely because of his special needs, almost like a tigress looking after her wounded cub. He is so much more vulnerable, and I could never ever let someone else care for him. In the words of the Black-eyed peas, if they were to talk to JH - "where is the love?"

You said it.

2shoes my severely disabled ds (in fact, in some of SS's categories, he even ranks as 'profound') is one the healthiest children I know.

There is a world of difference between severe disabilities, they will present with different challenges, have different outcomes and also share some challenges/outcomes. Severe disability do come in different flavours. Severe autism is very different to severe cerebral palsy which is different to spina bifida - very very different. Some people have similar physical/learning disability but present in very different ways

Some severely disabled children are not healthy though, aspiration causing bad chests, small infections causing major illness - you can't say all disabled children are healthy, just like you can't say all disabled children are unhealthy

There is not a world of difference for the parents of severely disabled children. Similar restrictions in what you can do, where you can go and very similar concerns about how the disabled child will be cared for in the future when they are adults and when their parents/family are dead.

My friend has a severe/profoundly disabled child whose need are very, very different from those of my ds. Very different indeed. Lots of medical needs, lots of hospital stays, lots of poor health, operations and so on.

Yet, my friend - who is very familiar with my ds's disability/ability profile - often asks me how I cope with my ds!

Of course disabilities present in myriad ways but the upshot of living with, and caring for, children with severe/profound disabilities is not too different at all.

I have Cerebral Palsy like Imogen. My mother was a single mother, grieving for the loss of my twin sister at the same time as caring for me. I spent five months in a special baby unit three hours away from home. My mother travelled there and back by train every single day to care for me and hold me. Soon, I was home and she was tremendous. My inability to feed, the fact that I constantly 'forgot' to breathe, all the hospital appointments, agonizing physiotherapy and my screams for mummy to make it stop, my inability to grow like the other little girls, worry about my future, and difficulty every moment of every day: my mum faced it all with a smile. I couldn't walk til I was three, I couldn't eat with cutlery til I was ten. But I was the happiest little girl alive. As an adult, I need assistance with all physical tasks and the pain is awful. I live with my darling DP now, who helps me to travel the world, and I recently got my PhD. A smile is never far from my face. And that crucially is down to the devotion, care, and belief of my best friend, my mum.

The Hollanders gave up on Imogen and I am shocked that anyone would praise them.

I'd like to send out much love to my mum for her courage and beautiful soul. I got my smile from her.

Vivis, with all due respect, you have cerebral palsy but not like Imogen. My daughter also has cerebral palsy and I think she is similar to you, there are varying degrees of CP. Imogen has the most severe CP I have ever come across. She will never walk or talk, she has hundreds of seizures a day and can't control her secretions, at times she is a very poorly child

I know the majority of parents cope/manage with children like Imogen but this family couldn't/didn't, they gave up the day to day care of her but are still very much part of her life

There are different degrees of all disabilities and no person is the same in how they deal with it

Vivia thank you so much for sharing that.
cna't say I like the "flavours" comments much
at the end of the day you have a child and you get on with it.
all this woe it is me stuff JH writes its just attention seeking imo. it doesn't help anyone,infact it makes life harder for parents like me.

By SomeGuy on Fri 23-Oct-09 18:08:52
There's only one thing worse than dumping your child as if she were an unwanted puppy, and that's writing endless self-pitying articles and books about it.

I think he sums it up perfectly

tribeleader they didn't even bother to try.
the just abandoned her.
would it all be so lovely if there was no Tania?

I am a firm belever in deal with what life throws at you not in a million years would I give up my child whatever the reason
but that IMO