A question for people with a disabled sibling

[crazydiamond222]

Hello, we have a boy with a genetic condition with affects his learning. Although he is a very happy and loving boy we do fear for his future as he will always need significant support as he only has limited verbal skills and quite severe sensory needs.

After genetic testing we were lucky to have another boy who is not affected who is now 3 months old. My son with the genetic condition has been amazing with him and has not shown any signs of jealousy which is great.

However I am now wondering whether in a year or so we should have a third child. Although I have no expectations of my second son caring for his sibling when my OH and myself are gone I do wonder whether the best thing to do would be to have another child to take the pressure off. Unfortunately he has no cousins and everyone else in his family are 40+ so he would be alone.

So I am wondering what the experience is of other people who have a disabled sibling? Did they find there was a lot of pressure on them as their parents aged and passed on. Would they have rather shared the burden with another sibling?

I am trying to weigh this up against the time of caring for another child on top of a toddler and child with special needs. It is currently hard managing them both but it is working atm and both are happy.

However I am also in my late 30s so having another child at this age is more risky anyway plus I also have genetic testing to go through. There is 50% chance of passing the condition on and I would have a termination if this happened. Egg donation would be another option.

What do people think would be the best option for the non disabled sibling?

I absolutely would have a third child for all the reasons in your post x

This is a tricky one but personally I wouldn't. Although you can test for this specific condition, I think the risk of your third child having a different disability (that can't be tested for), plus the general impact of having a third child on your family life, outweighs the advantages you are thinking about. I say this as someone with three DC with no disabilities. Three is much harder than two!

As someone who grew up with a disabled sibling I would say do not have another child.

I think you need a better plan than relying on one child to look after the other once you are dead. That is a horrendous burden to place on them and you effectively be stifling their life if they know this is your end game.

What if they want to move to Oz, have their own family? What if they have a disabled child of their own to care for? Or are you expecting them to stick around the family home to called up for their family duty?

You need a plan that doesn't rely on siblings. Id feel so so resentful of you if I were the younger siblings growing up knowing I'd be expected to take over my siblings care as you couldn't come up with a better plan.

I have a disabled younger brother and no other siblings. Yes, the demands on me have been great since I was a child although my parents did try to mitigate that somewhat. Now his state-funded care is so poor that I am setting up my own business to provide his care, whilst on mat leave from my intense job with my second child under two. It’s a burden. It’s stressful. We have no living grandparents or extended family that we’re in touch with, although my parents are around and in okay health. But having said all that, in my experience care is often left to one sibling among the lot anyway- often the daughter. Sometimes one moves away, sometimes it can get acrimonious... so I’d base your decision on whether you want and can care for a third, including as a pp mentioned another child with a disability, and not on hypothetical relationships in 20+ years’ time...

Thanks all. Pikikitkat, of course we are trying a best we can to have another plan for his care when we are gone and in no way will we put pressure on our son to care for him. However I imagine that some children would naturally feel that pressure anyway even though we will do our upmost best to mitigate against it.

Balonzz why do you say that? Is it because your parents would have had less time for you? If so would it have made a difference if they could have got extra help so 1 to 1 time would not be affected?

Goostacen what about when growing up, would it have been nice to have a non disabled sibling?

To be honest I am so bad about making decisions based on my instinct. We put off our second for so long over concerns of how it would affect the first but I now feel it was best decision ever and only regret is that we should have done it sooner. It just feels like such a gamble.

I had a school friend with a disabled sibling. She emigrated straight after uni as felt there was an unspoken expectation that she would be the carer when her parents no longer could. She wanted to be able to live her own life not have it chosen for her.

The more children the more stretched finances are, the less space, less time, hobbies etc become more limited. Having grown up like this, I made a conscious decision to limit my family size so they could have everything I didn’t.

I am the oldest of 4. My sister (second oldest) has a genetic condition that affects her learning.

I think it’s impossible to predict the future and how you kids will feel, where they will live etc. As long as you have the time, finances and emotional head space for another child then the decision rests on whether you’d like one. Another child has the potential to bring even more love into the family for both of your current kids - and for you.

Cross post with a different view from ice

One of my best friends has a disabled sibling. They are both in their 50s now. Her DF is caring for her sibling but he is really elderly now. The expectation is that my friend will give up work to care for her sibling when their DF can no longer do it.
As on outsider I wish my friend did have someone to share this with so that it doesn’t take over her entire life. But she says she’s happy to do it. It’s never been any other option for her. I suppose another sibling for your DC might be an answer but like others have said, you never know what paths your DC might take in their lives. Tricky

Have another baby because you want one not because you want additional carers for their brother later in life......

I agree with the above post, if you want another child then have one - you don't really need a justification for having another.
The only thing I'd say is would another child take much needed time and resources away from your disabled child or not.
Also I have 3DC, it's great but I'd never expect them to be my carer.

I too have a disabled DC.

Have another child if you want another one. I would not have a child for the sole reason that they would take my place as a carer, I would expect them to watch out for my disabled DC but it's not a given.

I have 6 siblings. I was the only one that put time and effort into organising a loved ones funeral and the only one who visits my mum regularly. We are close but when it comes to needing them, they are useless and busy in their own lives. I cant even count on my siblings- let on a sibling to help care for my child when I die.

Having another child to ‘take the pressure off’, is shortsighted.

I have a sibling with learning difficulties. They live independently but need significant support from my parents- have no capacity to manage money, for example. I expect to take over that support when they are no longer able. I’m glad I have another sibling to share this with, in terms of decision making on their behalf more than anything.

I grew up with a brother who had a severe learning disability; it certainly impacted my childhood. When having children of my own, I was told there was 'little chance' of them having the same condition, having had genetic testing. My son has the same issues as my brother - the tests just got better. My daughter is a carrier of the defective chromosome (not Fragile x)
There was certainly an expectation on my mother's part that I would care for my brother once my parents were gone, but I said that wasn't going to happen as I had enough to do with my son. Things were frosty for a while after that conversation! My son moved into a Supported Living placement which persuaded my parents that they should be looking for something similar for my brother. Unfortunately he only got to spend 2 years living in a residential placement before he sadly died, but he had a great time there.
Have another child if that's what you want. Please do not expect your child/ren to do anything more than keep a weather eye on their sibling.

It seems like PP can see the word 'disability' but not 'sibling'. I have one sibling, she is older than me. She has always been someone who guides me, shows me a different way when I feel stuck, someone who listens, she makes me laugh in the stupid way that only siblings can, she totally gets me, she absolutely loves me, she never judges me negatively, she is always on my side. She cares, she supports, she really knows me, she genuinely wants to know how I am. You can tell she is the older one as she is more confident, socially graceful, protective, wise (in my eyes) and a bit more canny. She has Downs Syndrome, she can't manage her own physical health issues (not DS related) due to learning difficulties and requires 24 hour care and monitoring. I'd be lost without her. I have children. She is a tremendously positive influence on them. She teaches them directly and indirectly what it is to persist, to keep trying, to have self-belief and self-respect, to have dignity, to be honest, to show care and respect to others, to aim high, to love ... the list goes on. How can you not value that and reduce it to something burdensome? I actually can't think of anything more valuable. I know a lot of people with less responsibility than I have who are a lot less happy and I feel like I have what everyone is searching for. She will come and live with us in the next year or so, she stays regularly now. It would help that someone else could be relied upon to step in when needed but would that be another sibling necessarily? Perhaps/perhaps not. Adults with social care needs can be allocated a social care budget and you can find the right person or people for them/for you. Yes, there is responsibility and sometimes worlds collide in terms of need - as it often anyway does in life as a parent. It can be challenging but then so can all good things - kids, education, high-flying careers - we don't always excel because things are easy, there's often more to be gained and that's why we do them. I realise this is a bit of a waffle. I wish you and your family every happiness.

I have a disabled DC and a non disabled DC. I didn't have my second child as any kind of carer for my first Disabled DC is in excellent supported living, enabling me to work and have a life.

As someone with a disabled younger sibling (who has now passed away), my thoughts are : I was burdened by the thought of having to care for him once my parents were no longer around, and it affected my life decisions. If I was a younger sibling and had any inkling that I had been born with the view to becoming his carer I would have been hurt and resentful. So no. I wouldn't have another in your position.

Please don't.
It has such emotional ramifications on siblings and the family as a whole. My mum's brother is disabled,he is now in his 70s (however the family had to live in the knowledge he would die young) it is horric.
The emotional strain breaks families and if you have a choice to stop this you should be responsible.
I feel very strongly about this. My mum is In her 60s and has had therapy and has never come to terms with how it affected and basically broke her family.

Disabled younger sibling, no others.

I too fear the future when my parents are no longer around.
There is an expectation of increased input from me when they go. I have no real desire to do this. I don't really have a relationship with him and find it all very difficult. This stems from childhood (and being totally forgotten).

I would not have a child for the sake of another.

There are no guarantees in this life.

I think that's a perfectly valid reason for having another child.

There shouldn’t be an expectation in anyway, shape or form that one of your children provides ongoing care for another.
You say you have no expectation but are considering another ‘to take the pressure off’ - there should be no pressure to begin with. And on that basis - no, I don’t think you should because even if it’s only subconsciously, you seem to envision a future where there is a level of care being provided by the sibling/s (real and hypothetical) and that’s not ok.

I have a disabled sibling that will never be able to live on her own. I assume she will live with me (or my brother but less likely as he is younger and at moment not settled) if she can no longer live with my DP. I am happy for her to move in with me if needed. We did start to look into giving me joint legal guardianship but she turned 18 half way through the process so stopped. Now she is adult it is slightly more complex to get and the immediate need for this also resolved so not restarted the process. I don't resent her nor think of her as a burden she is my sister, my kids adore her and she adores them.

However my sister doesn't need physical care i.e. can shower herself, dress herself. Like an 8yr old might have to remind to do it or what not to wear but don't have to do it for her. If she needed more physical or medical care I might feel differently. Also it has never been expected of me so I didn't grow up feeling the weight of any expectation.

Her condition is also life limiting although thankfully prognosis for her condition is better than when she was born few decades ago. The thought of her not living long enough to need to come to me worries me more than possibly needing to provide her with a loving home.

Sorry didn't overly answer your question. I wouldn't have another child purely to help your current non disabled child cope. Please do not assume DC will want or be able to look after another DC. My brother isn't set up to at the moment and it would severely detriment his life although he would I am sure if there was no other option but it would be a burden. In 10yrs his situation will likely be different but right now just out of uni not fair.