Residential care or adoption for disabled baby

LegacyUser · 15-06-2020 04:21PM #1

I am pregnant with a diagnosis of serious disability (not fatal) but too far gone for a termination and am not eligible for one here, and cannot travel for various reasons.
I know that these days people are expected to do the caring themselves but I would be overwhelmed and would have to give up my job, which I have worked hard for and couldn't support the child then if I had no work.
Does anyone know if there is such a thing as residential care provided by the state for a disabled child? Like nursing homes for older people?
I would alternatively give the child up for adoption. Can you even give a child for adoption, would anyone adopt a disabled child. I am too embarrassed to ask the social worker.

I know there are support groups and all that but I am on my own and not willing to go down the single parent route as 24 hour carer for the rest of my life which it looks like it will be. Please don't judge me as I have made the decision to complete the pregnancy, i am not looking for moral judgements here just an answer to my question.

Hannibal_Smith · 16-06-2020 08:40AM

Hi OP,

I'm so sorry to read your news. It must be such a hard time. I just wanted to say, don't be afraid to talk to the social worker, that's what they are there for. You need to talk to someone. Or what about your GP or the Hospital?

There is some information on the HSE website here with helpful numbers offering support and some information on adoption, which I hope is of some help.

eviltwin · 16-06-2020 09:12AM

Definitely have a chat to the social worker, it's their job and won't be anything they haven't dealt with before. Not sure about care homes for children but as a single parent you can go down the adoption route.

It would also be a good idea to get counselling for yourself. It will help you come to terms with the diagnosis and help you come to a decision.

3DataModem · 16-06-2020 09:41AM

worriedandpregnant wrote: »

I would alternatively give the child up for adoption. Can you even give a child for adoption, would anyone adopt a disabled child.

For what it is worth, I attended a foreign adoption preparation group meeting 10 years ago, and one of the couples specifically asked could they adopt a disabled child. There are people (perhaps those who grew up with disabled siblings) who want to nurture and love a disabled child.

As the others have said, speak to your social worker. They only want the best for the kid. The very best of luck.

Big Bag of Chips · 16-06-2020 09:48AM

The antenatal staff are there to support you. They will understand the struggles you are facing, especially the emotional ones.

There is nothing you can say to either the midwives or the social worker that they haven't heard before or haven't been trained how to deal with. Unfortunately, you will not be the only woman going through similar at the moment and the staff are trained how to deal with all issues compassionately and confidentially.

Please speak to someone at your next appointment.

TheBoyConor · 16-06-2020 12:14PM

I am sorry to hear that you find yourself in this very difficult situation.

The State is obliged to take children into care in case where the child, for whatever reason, cannot be cared for by their family. This may be due to being orphaned or abandoned or by the parents being simply unable to cope due to illness, or for other reasons. Tusla are the agency responsible for this nowadays. Years ago it was often orphanages run by religious orders and the like would have done this care on behalf of the State.

Where a parent is simply unable to cope and elects to have the child taken into care by Tusla, it is termed voluntary care. I am thinking that this would still allow you to be in the child's life to some extent perhaps. Is this what you are looking for? Or are you moreso of the mind to have the child adopted or turn them over to the guardianship of the State?

Do not beat yourself up about this. Nomatter how bad you feel your situation might be, social workers have seen situations far far more extreme in their work and you, as a genuinely concerned parent who wants the best for the child, will be treated with compassion and respect. The days of "the crulety man" arriving with the priest and guard are long gone.

More details are on citizens advice https://www.citizensinformation.ie/en/birth_family_relationships/services_and_supports_for_children/children_in_care.html

information about voluntary care
http://www.communitylawandmediation.ie/_fileupload/VoluntaryCareBookletforAdvocates%20Dec%2016%20FV.pdf

TheBoyConor · 16-06-2020 12:33PM

there is also pre-adoption foster care available for small babies while the adoption is sorted out so your baby can be taken care of straight away. All care can be organised through tusla but they generally do not provide the actual care themselves, they have care providers that may be Residential Institutions or providers who maintain panels of foster families with whom a child can be placed.

This is one are in which there hasn't been much of a break with the past. As in times gone, it is still the case that the state or it's agencies don't actually run the residential care institutions themselves, preferring to keep the hands on work at an arms length - the actual services themselves are farmed out to social care providers who operate from their own privately or community owned centers. The HSE also operate some residential care facilities for children with the most demanding needs. Religious institutions still operate a small number of residential care facilities in the country too but in decades gone by, they would have been the main providers. But overall, it is Tusla who are responsible for it at the top of the chain.
A major difference today is that the monitoring and inspection of the residential care facilities is unrecognisably improved over what it may have been like in the past so the quality of care is similarly unrecognisable from what might have been available years ago.
My point is, what you might think you might be sending your child to, from what you hear in stories and media and films, is not really what it is like in modern day residential institutions which are all run to a very very high standard and the put the needs of the child first and above everything.

shesty · 16-06-2020 05:40PM

Please talk to someone.I cannot imagine the trauma of this news for you.Do not worry about being judged, this is turning your life upside down, ask all the questions you need to, say all the things, no matter what.I don't think anyone here is qualified to advise you on what choices you make, but do talk to the supports that are there before you make any choices.

wildwillow · 17-06-2020 02:55AM

I think you are very brave in your knowledge of not being able to cope with a disabled child. You will get help from Tusla and they will treat you with compassion. I hope you can get councdlling to help through this.

I wish you the very best in this difficult time.

fits · 17-06-2020 08:20AM

This is a very difficult time. A diagnosis like that turns the world upside down. I cried for weeks but got diagnosis when child was two.

Can I suggest you link up with parents of children with same diagnosis. It was the most helpful thing for me. There are a lot of groups online and maybe you could ask questions anonymously.

It depends on diagnosis and the child obviously but in our case things aren’t nearly as bad so far as you’d think they might be. It takes time to get the head around it though.

17-06-2020 09:27AM

fits wrote: »

Can I suggest you link up with parents of children with same diagnosis. It was the most helpful thing for me. There are a lot of groups online and maybe you could ask questions anonymously.

This is a great idea. There are disabled children in my family and they bring us so much fun and joy and happiness - you never know what wonderful things could lie ahead for you. If you spoke to their parents (my siblings) they would say, yes there are challenges, but there are no babies without challenges!

I've also worked with disabled people and loved it.

A disability diagnosis isn't a death sentence, allow yourself to be open to the idea that this *could* be something positive - so many of the problems around disability are about how disability is perceived and how the world is ordered against disabled people - the disabilities themselves aren't necessarily the issue at all!

Get as much information as you can from all sides and draw in as much support as possible for yourself. You never know where you could end up or how good life could be for you and your baby. You are not the first woman to go through this. I wish you all the luck in the world.

17-06-2020 09:30AM

worriedandpregnant wrote: »

would anyone adopt a disabled child.

Just to add, myself and my husband hope to adopt and would not rule out a disabled child, and friends of ours adopted a blind little boy with an intellectual disability and he is the light of their life.

fits · 17-06-2020 10:01AM

wildwillow wrote: »

I think you are very brave in your knowledge of not being able to cope with a disabled child.
.

I was just thinking about this post. Nobody knows whether they can cope until they actually do it. The reality can be very different to what we think it might be. Obviously I can only speak to our own situation and every situation is different.

If I had found out our diagnosis when I was pregnant I would not have expected to ever find a childminder or return to work and yet I have both those things. There are Childminders out there who will take on children with disabilities.

I agree with advice to contact social worker etc. It is good to look at what options are out there.

TheBoyConor · 17-06-2020 10:11AM

There are also institutions that provide periodic respite care for parents of severely disabled children to give them a break from round the clock care duties when the level of disability is profound.

eviltwin · 17-06-2020 11:46AM

Tbf to the OP she has said she is going to be parenting alone and would have to become a full time carer for a child with profound special needs. It’s a lot to take on and I’m sure she has thought of little else since getting the diagnosis. Special needs vary widely and without further info on the diagnosis it’s impossible to give her any idea of how it will be.

That is why it is so important she gets counselling to come to terms with the diagnosis and it’s impact and to help her come to peace with whatever she chooses

There is help out there but sometimes you have to look for it. Hospital staff and social workers don’t always know what’s out there. A special need is a challenge but can be very rewarding but you need to go in with your eyes open and most importantly, you need to want to and it’s ok not to want to.

Be kind to yourself x

fits · 17-06-2020 12:01PM

eviltwin wrote: »

Tbf to the OP she has said she is going to be parenting alone x

Absolutely. It’s hard enough and doing it alone is that much harder. There are an awful lot of single parents of children with special needs out there as a lot of relationships break up.

[/profound special needs]

OP said severe not profound. The terms do mean something. The scale is mild/moderate/severe/profound. My child is probable mild or moderate. Many children with Down’s syndrome would be the mild or moderate but it varies wildly.

I’d be absolutely supportive of whatever path OP chooses to take. But as I said initial impressions of what it might mean for your life might not bear out in reality. And doctors can get things very very wrong too. Anyway there’s good information in the thread about supports that may be available. I hope OP gets the answers she is looking for.

JustAThought · 17-06-2020 12:22PM

OP - my heart goes out to you for the situation you find yourself in and for having the bravery to have this baby and go through all of that, and to have the bravery and strength to stand by your convictions and to know what is good for you and your life, and make good decisions for your mental health and future as well as planning for a good, suitable, resources, loving and caring home for your baby.

You are right in assuming that social ‘care’ workers can be very manipulative and judgemental - you can see it here on this thread - the pressure on you to keep the baby must be huge, and I have no doubt that these kind of passive assertions will also dominate social workers conversations where at all costs they will try and keep your options open to return to the baby or to try and convince you to keep the baby - I know someone who about ten years agonwas in the exact position you find yourself in and the pressure that was put on her to keep the baby by social workers was horrendous and really damaging. Despite being clear she wanted adoption she was emotionally bullied by well intending social workers to foster and visit, prolonging her guilt and putting into serious mental distress that lasted years. This also prevented the child being adopted as fostered children are not eligable for adoption - or were not then.

I would suggest you put - in writing if needed - a clear clvil request for adoption information. Be clear that this is what you want and be brief. Advise on the the medical diagnosis as in adoption as well as in fostering there are criteria and some prospective parents may choose mental disability over physical
disability or vice versa, or may have experience
of or preference for downs syndrome over other disabilities etc. It will
make it easier to find a suitable family for the baby who have the skills and ability to cope.

Be mindful that in later years a FOI request could be done on the file so it might be useful to get a PO Box address or use a rental address
for correspondence. Also for adoption you typically used need both patents consent - somif the fathers name is
listed as unknown (I gather from your original
post he has abandoned you and his child and wants no part in his responsibilities ) then this makes it easy for a clear adoption to progress and the baby to have a good chance from birth of being adopted into a family who want it and are deemed suitable for its needs and development.

Fosterparents often choose to
foster for a few years and may then apply to adopt a particular child or may choose to be long term foster parents until the child
is an adult or leaves school/ care. Ironically there are more medical, financial and state supports to foster families and foster children than to
ones that are adopted - but there you have it. As you are already seeing - apart from emotional advice from other striken parents and a hope of perhaps one week off for residential care a year or meagre support from charities there is very little actual practical help for families or a
single parent of a disable child - if they are Irish. They are the most ignored and in need section of society and their pitiful pleas for help are shrugged off by politicians and the like - despite everyone seeming to agree that a
life of 24/7 misery,poverty and mental anguish for the emotionally balckmailed mother is the best socially accepted solution.

Stay strong in your outlook and be firm. No doubt there will be hoards at your door ready to tell you how you should live in poverty and misery for the next 60 years minding a disabled child 24/7 with pitiful meagre sum from the state that keeps you in a life of constant crisis and misery and that this will rewarding and fulfilling. There are families and living couples with the time and resources who voluntarily choose and want to have these children and are state audited and selected in their ability to do so. There are also facilities funded by the government who provide residential and medical care - such as the Community care facilities provided in Baldoyle, Lucan and by the IWA for older children and many others. All these have access to facilities,
medical and nurturing facilities (physio/developmental/etc) that you as a single mother will have to beg and plead to have - and probably never gain access to.

I guess you don’t have a social worker allocated to you. Start the process now while you are able and get into the system. Ask/tell your neonatal care provider/ doctor that you want to have the child adopted and they can refer you for assistance or get onto the citizens advice or tulsa website and see what their processes and policies are. Many referrals have to come from a social worker or doctor so
start with your doctor and don’t let them emotionally bully you. You are also entitled to a
life of simple dreams and aspirations and should not let having a baby that yiu choose to give life to take your chance of a normal and happy simpke life away from you - particularly when there are people, foster families, parents experienced and audited to care for disabled children who are signed up, willing and waiting for a baby to have and care for. Stay strong. You are an amazing person.

fits · 17-06-2020 12:27PM

*shakes head*. I don’t even know where to start with that.

JustAThought · 17-06-2020 12:40PM

fits wrote: »

*shakes head*. I don’t even know where to start with that.

And with attitudes like that it is no wonder the OP is on boards looking for advice because she feels she cannot get it through the channels provided - because they are so judgemental and just want her to keep the baby. Figures.

Just because life with a disabled baby was your choice does not make it everyone ls choice - the OP was very clear with that. But of course like many, you are not listening to the mother nor to what she wants or has asked for. Just like the social workers she can get no support from because they magically judge and know best too. God help that poor woman/OP.

TheBoyConor · 17-06-2020 12:41PM

I think that poster is confusing the inclinination of social workers to favour a child staying with their parents as being some sort of conspiracy or underhand scheme to do their best to avoid the state and Tusla having to take on another child and the expense involved.

Of course a SW is going to be inclined to have the child stay with the parent if possible. It is universally understood by experience and best practice in social care, and recognized in Bunreacht na hEireann and the EU Charter of Fundamental Rights, that the best place for a child is within the family home. So that is always going to be the first preference of SWs, and Tusla. That is not a scheme or conspiracy or shirking of responsibilities, it is giving effect to social care best practice and the provisions of Bunreacht na hEireann.

No SW is going to straight off jump straight to taking a child into institutional care without exploring all reasonable options for having the child remain with their family. If they did, they would not be a very good social worker.

However, as the poster quite rightly says, if the OP genuinely has their mind made up that they want to give the child up, then they need to make their wishes and the conviction of the decision, and the reasons for it very clear to the SW and Tusla. If Tusla are satisfied that the mother is sufficiently averse to keeping the child, and that there is no realistic prospect of her changing her mind, and that for her to be compelled to keep the child would be to the detriment of the child's well being, then they would be well justified in taking the child into voluntary care.

And another point of note, if the mother hypothetically, and I don't like using the word abanodoned so I will say presented the child to Tusla SWs or some other agency such as the HSE, and refused any subsequent contact from said agencies, then realistically Tusla would have no other option but to take the child into institutional residential care. I am not advocating that or saying it is right, but there are occasional isolated cases of it happening, usually where the parent is a severely troubled addiction sufferer or with significant mental health difficulties.

There is no conspiracy there.

fits · 17-06-2020 12:53PM

JustAThought I have clashed with you before on various issues so it’s not surprising it’s happening again.

Let me get this clear

I am pro choice, I’m pro women having choices about what to do with their babies.

I also have a lived experience of parenting which may or may not help the OP. I’ve received the diagnosis and thought my life was over and cried for weeks. IVe considered what would happen if I got pregnant again and had another diagnosis after a CVS or amniocentesis and like OP I know that would be too late in pregnancy for me but respect that it isn’t for others. I’ve decided not to have any more children so I’m not in that situation. Please do not diminish that because you have no fcuking idea what it’s like unless you go through it. The OP is in the middle of the whole sh1tshow right now. It’s an unbelievably traumatic time and you do need time to come to terms with it.

Not everyone who has a disabled child is miserable believe it or not. It may seem incredible but it’s true. Some people, a lot have a really tough time and some can manage ok. It’s not necessarily a life sentence. There is no way of knowing how the child will turn out. I know this from my own family and from knowing other families with similar diagnoses. I know too I would find it hard to cope with a severe/profoundly disabled child especially alone.

My point to the OP is to get as much information as she can right now.

fits · 17-06-2020 12:56PM

JustAThought wrote: »

Just because life with a disabled baby was your choice does not make it everyone ls choice - OP.

Choice? Ha.

wildwillow · 17-06-2020 03:14PM

The OP only has to read a few posts here so see how judgemental people will be. Most families with a special needs child will muddle through, learning as they go and fight for their child, whether for physical or mental needs or both.

Many marriages break up because the strain is so severe.

Single mothers live a life of stress and poverty caring for the child or children. and it is usually the mother who is literally left holding the baby.

There is no help available. An hour here or there, fight for equipment, depend on charities for extra nursing, struggle for education, the list is endless.

My friend has a child with Down's syndrome and he is very well able to function thanks to her dedication since his birth. But he has serious health issues, so she cannot relax. He has finished secondary school and there is nothing for him now, as his stamina is weak.

Father left early and other children missed out on so much as he always had to come first.

Until we as a society decide to cherish all our children equally and give these families enough help to function normally, we cannot make a judgement about anyone who feels unable to take on a lifetime of caring.

I have great admiration for all the families who care for their child but each will admit that it is no walk in the park. Hardly anyone would wish for a special needs child.
They are so immersed in coping that there is no energy or time to fight the system.

eviltwin · 17-06-2020 03:24PM

fits wrote: »

JustAThought I have clashed with you before on various issues so it’s not surprising it’s happening again.

Let me get this clear

I am pro choice, I’m pro women having choices about what to do with their babies.

I also have a lived experience of parenting which may or may not help the OP. I’ve received the diagnosis and thought my life was over and cried for weeks. IVe considered what would happen if I got pregnant again and had another diagnosis after a CVS or amniocentesis and like OP I know that would be too late in pregnancy for me but respect that it isn’t for others. I’ve decided not to have any more children so I’m not in that situation. Please do not diminish that because you have no fcuking idea what it’s like unless you go through it. The OP is in the middle of the whole sh1tshow right now. It’s an unbelievably traumatic time and you do need time to come to terms with it.

Not everyone who has a disabled child is miserable believe it or not. It may seem incredible but it’s true. Some people, a lot have a really tough time and some can manage ok. It’s not necessarily a life sentence. There is no way of knowing how the child will turn out. I know this from my own family and from knowing other families with similar diagnoses. I know too I would find it hard to cope with a severe/profoundly disabled child especially alone.

My point to the OP is to get as much information as she can right now.

We don’t know what disability the OP is referring to so it may be completely different to your experience. I understand why people are giving her reassurance that it might not be as bad as she thinks but it does read as though her concerns are being dismissed when she seems quite clear in the OP what she wants.

She asked for specific information and it feels like some posters aren’t hearing her.

TheBoyConor · 17-06-2020 03:25PM

that is all well and good for families, in the everyday sense of the word, but you must realise that the OP is not a family. She is all alone in this and has no partner and would have to do 24/7 care and still somehow have a job.

It is an afully crap decision to have to make. It is a lose lose decision.

We don’t know what disability the OP is referring to so it may be completely different to your experience.

From what I can interpret from the op, it is a disability that is not fatal, but only just, ie a profound special needs.

17-06-2020 04:18PM

I think there's some confusion about what being judgemental means...

There are many families who, let's say in relation to DS, were told their kids wouldn't amount to anything and experience has shown them a different reality.

Giving a child up for adoption is a huge decision that will affect Mam as much as baby if not moreso, and sometimes people need to hear that you can have a disabled child and be happy. It's possible.

She's also been reassured as a direct answer to her question that there are people out there who feel able to care for disabled children and giving a disabled child up for adoption is a real and viable option.

This... isn't judgementalism. It's a reality that co exists with other realities.

fits · 17-06-2020 06:44PM

eviltwin wrote: »

We don’t know what disability the OP is referring to so it may be completely different to your experience. I understand why people are giving her reassurance that it might not be as bad as she thinks but it does read as though her concerns are being dismissed when she seems quite clear in the OP what she wants.

She asked for specific information and it feels like some posters aren’t hearing her.

Yes I know we don’t know what the disability is which is why said there is huge variability. Even with the same condition children can vary hugely. I really am not dismissing OP at all and I hope she doesn’t think so. I am absolutely not trying to reassure OP but honestly what some doctors tell you can be wildly off the mark. They arent experts in every disability out there and how could they be. There isn’t even a specialist for my sons condition located in ireland. That’s why it’s worth asking questions of other parents anonymously. They won’t give false reassurance either in my experience. They know how tough it can be. I understand the turmoil OP is experiencing and am saying what helped me with my mild/moderate kid understanding that her child may be in a more severe category.

cannotlogin · 17-06-2020 08:55PM

Please don't be embarrassed to ask for a social worker and support from family/friends and anywhere else you can get it.

It's a very difficult situation and you have to do what's right for you and the right decision for you is very likely to be the right decision for the child too.

TheBoyConor · 17-06-2020 09:00PM

Can I ask what the diagnosed condition is?

qwerty13 · 18-06-2020 01:34AM

I know this is going to be a controversial thing to bring up, but here we go.

There was a documentary on U.K. tv re people choosing to have abortions if they found out that Down’s Syndrome was a probability.

The woman doing the documentary had a child who had DS, but seemed to view anyone not fully embracing that as trying to eradicate her child. She also clearly had a lot of resources, supports and money available to her, and her child was on the very mild scale of life issues.

The documentary also showed people who did not have the same supports, or indeed any supports. And had little money. Whose lives would have been made immeasurably more difficult, if not impossible.

My take away from that programme is that it’s far easier to be optimistic and believe that you can handle adversity if you have support and money. And that it’s hard to understand how someone else “cant see that it’s do-able / can bring joy” if you have support and money. Whereas people who knew, who really knew the lack of money and support available, knew that they simply could not cope, and that’s why they chose not to continue with the pregnancy. The documentary host was incredibly upset and incensed by this.

I guess I’m trying to say that while I know the tv programme I’m talking about isn’t directly comparable to the OP’s experience, in that it is a more severe disability - that programme really made me think that we can all be idealistic about things, but that unless there’s money and support readily available, is a very long and incredibly tough road.

There is no magical happy solution. But I admire the OP for saying that she knows its a road that she’s not equipped to deal with. That cannot have been an easy thing to say.

I wish you the best in the world OP.

ILoveYourVibes · 18-06-2020 06:49AM

I have no advice op.

But I hope the best for you whatever you decide.

x

Residential care or adoption for disabled baby

Comments