Difficult Situations
Discussion
My wife and I have been struggling to make a difficult decision for around a year now. I guess I am hoping by writing it out something might come to me or someone who has gone through similar will be able to offer some wisdom. Maybe even some neutral advice.
WARNING MUMSNET POST INCOMING.
The issue is that my wife and I have always said we wanted 2 children. We have a 4 year old with such extreme learning disabilities that his headmaster has floated the idea of residential schooling in the future (that hurt). We have been advised because of this we have a 70% chance of having another with similar needs. This would be extremely difficult to deal with. It would make the simple act of leaving the house a minefield. Before we knew how difficult our sons situation was going to be we have actually been trying for 3 years with no luck.
That leaves us where we are now. With the options of going IVF potentially spending a lot of money to end up in a situation that scares the life out of us. Other options are adoption but on recent advice this may not be a good idea as despite how much we want to, we couldn’t give a stable home. Which simply wouldn’t be fair.
For the first time in my life feel like I’m out of options to move forward.
My wife would like a sibling not just to have another child but hopefully someone to look out for there big brother when we are gone.
Myself I have the same thing plus as it stands when I die that will be the end of my family. Everything my father and I built will go knowhere . Which I know is a pathetic thing to worry about but the plan was always to make life better for future generations.
I probably just need to get over it.
Thanks for reading sorry about my appalling writing style.
WARNING MUMSNET POST INCOMING.
The issue is that my wife and I have always said we wanted 2 children. We have a 4 year old with such extreme learning disabilities that his headmaster has floated the idea of residential schooling in the future (that hurt). We have been advised because of this we have a 70% chance of having another with similar needs. This would be extremely difficult to deal with. It would make the simple act of leaving the house a minefield. Before we knew how difficult our sons situation was going to be we have actually been trying for 3 years with no luck.
That leaves us where we are now. With the options of going IVF potentially spending a lot of money to end up in a situation that scares the life out of us. Other options are adoption but on recent advice this may not be a good idea as despite how much we want to, we couldn’t give a stable home. Which simply wouldn’t be fair.
For the first time in my life feel like I’m out of options to move forward.
My wife would like a sibling not just to have another child but hopefully someone to look out for there big brother when we are gone.
Myself I have the same thing plus as it stands when I die that will be the end of my family. Everything my father and I built will go knowhere . Which I know is a pathetic thing to worry about but the plan was always to make life better for future generations.
I probably just need to get over it.
Thanks for reading sorry about my appalling writing style.
OP our daughter was born with Downs Syndrome in 2005. It was a complete shock to us.
We were then told if we had another child it was more likely to have DS. This was and is complete BS. Approximately 1/1000 of all children born has DS that is the fact and something we have learned is that every single person on this planet is an individual with their own characteristics both mental and physical.
We went ahead and had another child our son born in 2007. We were adamant that we would not test. As it happens he is seemingly what people would call perfectly “normal” even very gifted by social and educational measures. You know what though he is just like our daughter another human individual with all the flaws and possibilities that form all our characters.
I don’t know what the nature of your sons condition is and it’s believed or known cause but whatever you decide I wish you all the best. We too worry about our daughter but every day she amazes us with her ability.
We were then told if we had another child it was more likely to have DS. This was and is complete BS. Approximately 1/1000 of all children born has DS that is the fact and something we have learned is that every single person on this planet is an individual with their own characteristics both mental and physical.
We went ahead and had another child our son born in 2007. We were adamant that we would not test. As it happens he is seemingly what people would call perfectly “normal” even very gifted by social and educational measures. You know what though he is just like our daughter another human individual with all the flaws and possibilities that form all our characters.
I don’t know what the nature of your sons condition is and it’s believed or known cause but whatever you decide I wish you all the best. We too worry about our daughter but every day she amazes us with her ability.
He has a learning Disability which seems to be the most challenging aspect mentally is around 10 months. Autism and Pica.
Autism seems to be a case of some people it’s a one off thing for others it appears genetic. We have friends with 5 kids one autistic and an other with 3 kids all autistic. We won’t know which we are until it happens.
To give you an idea of my sons needs my wife struggles to take him out by herself. I have mentally prepared that as he gets older I will probably need to employ full time carers to help us. I’m building a house at the moment that will allow this easily.
Unfortunately we have seen first hand because of a relative that if not watched carers cans and will take financial and physical advantage of disabled people. A very close family member has been through this.
It’s not the case that I would expect a sibling to literally care for their brother but simply to just be a point of contact to look out for there interests. Nothing more.
Not worried about my literal name disappearing more that it would come to an end. I know this is irrelevant but for some reason weighs on me having taken on from my parents.
Autism seems to be a case of some people it’s a one off thing for others it appears genetic. We have friends with 5 kids one autistic and an other with 3 kids all autistic. We won’t know which we are until it happens.
To give you an idea of my sons needs my wife struggles to take him out by herself. I have mentally prepared that as he gets older I will probably need to employ full time carers to help us. I’m building a house at the moment that will allow this easily.
Unfortunately we have seen first hand because of a relative that if not watched carers cans and will take financial and physical advantage of disabled people. A very close family member has been through this.
It’s not the case that I would expect a sibling to literally care for their brother but simply to just be a point of contact to look out for there interests. Nothing more.
Not worried about my literal name disappearing more that it would come to an end. I know this is irrelevant but for some reason weighs on me having taken on from my parents.
Can I ask why you think that you couldn't provide a stable home for an adopted child although you could provide one for a second born child if it didn't have special needs? How would their requirements differ? I'm sorry if I'm missing an obvious point here.
Sorry, my post crossed with yours. I've edited the above.
Sorry, my post crossed with yours. I've edited the above.
Edited by Bluesgirl on Sunday 4th October 23:24
Edited by Bluesgirl on Sunday 4th October 23:31
Not a nice dilemma to face and in your position not sure what I would choose, so a couple of things from a purely hard nosed perspective:
When there is a high risk with significant negative consequences, the normal counsel is don't do it. This is a high risk, for something with few practical upsides. Only you can judge if the emotional needs are sufficient upside to justify the risk. The most likely outcome is that the risk is going to materialise. Would you stake the farm on black? Because what you are proposing would have longer odds on a successful outcome..
ntiz said:
We have been advised because of this we have a 70% chance of having another with similar needs. This would be extremely difficult to deal with. It would make the simple act of leaving the house a minefield.
When there is a high risk with significant negative consequences, the normal counsel is don't do it. This is a high risk, for something with few practical upsides. Only you can judge if the emotional needs are sufficient upside to justify the risk. The most likely outcome is that the risk is going to materialise. Would you stake the farm on black? Because what you are proposing would have longer odds on a successful outcome..
ntiz said:
My wife would like a sibling not just to have another child but hopefully someone to look out for there big brother when we are gone.
This point caught my eye. To bring another child into the world with one of the main intentions being for it to look after another child with potential difficulties, is wrong. You should not be planning on putting that burden on a child. I have no helpful words of advice but I wish you and your family the best of luck for whatever your future holds.
I would like to add that there is no need to feel bad about harbouring a concern about your line ending. Whilst it might rationally seem immaterial, the desire; in fact the need to pass ones genes down the generations is hardwired into our DNA and to feel the inability to do so as a loss is entirely natural.
I would like to add that there is no need to feel bad about harbouring a concern about your line ending. Whilst it might rationally seem immaterial, the desire; in fact the need to pass ones genes down the generations is hardwired into our DNA and to feel the inability to do so as a loss is entirely natural.
GT03ROB said:
ntiz said:
My wife would like a sibling not just to have another child but hopefully someone to look out for there big brother when we are gone.
This point caught my eye. To bring another child into the world with one of the main intentions being for it to look after another child with potential difficulties, is wrong. You should not be planning on putting that burden on a child. I have to admit, even a marginally increased risk would put me off ... even the very low risk of DS terrified the life out of me.
I have a friend who has 3 kids, all have a mix of degrees of DS, severe autism, and other genetic disorders ... they (the parents) have zero quality of life.
I have a friend who has 3 kids, all have a mix of degrees of DS, severe autism, and other genetic disorders ... they (the parents) have zero quality of life.
I think perhaps I haven’t been clear we always wanted 2 children and that feeling has grown stronger from wishing to experience a more typical parents child relationship/bond. We are both desperate to spoil our kids.
My wife feels the way she does because she comes from a family where she can walk to every single one of her relatives houses from her parents. She basically thinks my parents are cruel for making me an only child. The concept of leaving a disabled child behind with no support network worries her. I personally don’t think that’s unreasonable.
I’m not talking about breading a made to measure carer
My wife feels the way she does because she comes from a family where she can walk to every single one of her relatives houses from her parents. She basically thinks my parents are cruel for making me an only child. The concept of leaving a disabled child behind with no support network worries her. I personally don’t think that’s unreasonable.
I’m not talking about breading a made to measure carer
You mention that you can't guarantee a stable home for an adopted child - what would be different if you could naturally conceive a healthy child? It sounds like you're going to be spending a huge amount of additional time and resources looking after your son; perhaps it would be best to focus on giving him the best life possible.
ntiz said:
I think perhaps I haven’t been clear we always wanted 2 children and that feeling has grown stronger from wishing to experience a more typical parents child relationship/bond. We are both desperate to spoil our kids.
My wife feels the way she does because she comes from a family where she can walk to every single one of her relatives houses from her parents. She basically thinks my parents are cruel for making me an only child. The concept of leaving a disabled child behind with no support network worries her. I personally don’t think that’s unreasonable.
I’m not talking about breading a made to measure carer
If you & your wife can cope with the worst outcome, without placing a burden on anyone else, then it's a no brainer. Go for it. My wife feels the way she does because she comes from a family where she can walk to every single one of her relatives houses from her parents. She basically thinks my parents are cruel for making me an only child. The concept of leaving a disabled child behind with no support network worries her. I personally don’t think that’s unreasonable.
I’m not talking about breading a made to measure carer
If you make a decision alive to the possible consequences I don't see a problem.
How old are you?
Also, without sounding to blunt, what is the life expectancy of your child? This is the time to start getting help. Without help you might find yourself both giving up your lives
Would you consider residential school? It is a horrible decision to face, but they will be better set up and trained for care, and care will get harder not easier over time.
This would open up opportunities for siblings naturally (presumably with testing), via a donor or adoption.
Also, without sounding to blunt, what is the life expectancy of your child? This is the time to start getting help. Without help you might find yourself both giving up your lives
Would you consider residential school? It is a horrible decision to face, but they will be better set up and trained for care, and care will get harder not easier over time.
This would open up opportunities for siblings naturally (presumably with testing), via a donor or adoption.
Speaking as a wholly unqualified non-parent:
Let's say child number 2 is born with similar difficulties, would you be happy with that?
Do you both want a second child, whatever the outcome, or is it hoping for a (forgive the crude and unfair terminology) more normal child? I mean more than a parent usually wants their child to be healthy.
Do you both have the hopes in order of:
Perfectly standard and healthy second child
Child with difficulties
No second child
Are the last two swapped over for either of you?
Or what is the risk Vs reward/difficulty between the options? Are they pretty much a light preference, but you don't mind, or is it a massive gulf?
It might be worth you and your wife having a session or two with a professional counselor. They can offer a safe space for you to say what's on your mind to reach other and mediate and guide the conversation, maybe ask questions that prompt difficult but necessary answers.
Let's say child number 2 is born with similar difficulties, would you be happy with that?
Do you both want a second child, whatever the outcome, or is it hoping for a (forgive the crude and unfair terminology) more normal child? I mean more than a parent usually wants their child to be healthy.
Do you both have the hopes in order of:
Perfectly standard and healthy second child
Child with difficulties
No second child
Are the last two swapped over for either of you?
Or what is the risk Vs reward/difficulty between the options? Are they pretty much a light preference, but you don't mind, or is it a massive gulf?
It might be worth you and your wife having a session or two with a professional counselor. They can offer a safe space for you to say what's on your mind to reach other and mediate and guide the conversation, maybe ask questions that prompt difficult but necessary answers.
OP I empathise with your predicament. I can also see the rationale for wanting a sibling to be around to look after your son in future years - but if I can share my observations of friends who went through similar experience (albeit more extreme) :
They had a son born with brain damage and learning difficulties also wanted a second child, for some of the same reasons. Their second son was born with hydrocephalus and also had severe brain damage.
The children were well looked after, but the parents really suffered. Over a few short years I saw the life drain from two young people - going from energetic, intelligent, witty, bubbly people - to walking ghosts. It really took its toll on them - they were constantly exhausted. Dad had to continue working to bring an income in, while Mum had to give up her career. Number 1 grew into a quite a chunky lad which bought physical challenges into the mix. Mum grew resentful of Dad having a "normal" day existence. Dad would get home and take over care duties into the evening. Neither of them had time for any hobbies/socialising. They started to neglect their own health & looks. Within a few short years they were divorced, Dad had a breakdown and went from being a high-flying Senior Exec in a Global company on healthy 6 figure salary and "the perfect lifestyle" - expensive cars, posh Golf club membership, Annual Skiing holidays etc - to being a dribbling nervous wreck. Last I saw him he was working for Tesco as a home delivery driver.
It literally destroyed them.
Sorry to put a negative view across - but it's what I have seen happen first hand.
They had a son born with brain damage and learning difficulties also wanted a second child, for some of the same reasons. Their second son was born with hydrocephalus and also had severe brain damage.
The children were well looked after, but the parents really suffered. Over a few short years I saw the life drain from two young people - going from energetic, intelligent, witty, bubbly people - to walking ghosts. It really took its toll on them - they were constantly exhausted. Dad had to continue working to bring an income in, while Mum had to give up her career. Number 1 grew into a quite a chunky lad which bought physical challenges into the mix. Mum grew resentful of Dad having a "normal" day existence. Dad would get home and take over care duties into the evening. Neither of them had time for any hobbies/socialising. They started to neglect their own health & looks. Within a few short years they were divorced, Dad had a breakdown and went from being a high-flying Senior Exec in a Global company on healthy 6 figure salary and "the perfect lifestyle" - expensive cars, posh Golf club membership, Annual Skiing holidays etc - to being a dribbling nervous wreck. Last I saw him he was working for Tesco as a home delivery driver.
It literally destroyed them.
Sorry to put a negative view across - but it's what I have seen happen first hand.
My aunt and uncle had the same advice back in the ‘50s. Both profoundly deaf, they were told they had a high chance of a child with disabilities. First one is profoundly autistic and has been in residential care since his late teens. He must be 65 now. Then they were told not to have another, but did. She’s not autistic, but has had severe mental health problems, schizophrenia, voices, many many suicide attempts, she’s just about managing supported living but spends many weeks in psychiatric units. It’s no life really. My uncle died some years ago, my aunt is 91 and not really coping with life. One of my other cousins and I will end up picking up the burden when my mum, also 91, is no longer able to manage their affairs (she’s quite remarkable).
Don’t feel guilty about residential schooling. My cousin went from violent and uncommunicative to at least being able to enjoy listening to music, buying his own clothes (with a managed allowance) and recognising his parents. Took a long time though, but at least he has some sort of life.
TL;DR: Don’t do it. Adopt if you can really cope with another child.
Don’t feel guilty about residential schooling. My cousin went from violent and uncommunicative to at least being able to enjoy listening to music, buying his own clothes (with a managed allowance) and recognising his parents. Took a long time though, but at least he has some sort of life.
TL;DR: Don’t do it. Adopt if you can really cope with another child.
JulianHJ said:
You mention that you can't guarantee a stable home for an adopted child - what would be different if you could naturally conceive a healthy child? It sounds like you're going to be spending a huge amount of additional time and resources looking after your son; perhaps it would be best to focus on giving him the best life possible.
This is actually a good point. Until very recently we where very keen to adopt. I think it would be great.What has set off this issue is that a friend of ours who is involved with fostering. Gave us the point of view that most children up for adoption have had incredibly difficult starts in life and to bring them in to our difficult situation would perhaps not be a good thing to do. I sort of disagree but it shook my wife.
I guess with our own child they would be born into it and would grow up with it. Wouldn’t know any different hopefully grow up to be very accepting of disability.
I should say that I have mixed feelings about all of this. Not sure what to think about anything.
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