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?

Quite aside from the expectation (and it is an expectation if you’re thinking about this) that your child will look after their sibling when they’re older, what happens if your 3rd child has the same condition or even a different one? Then you’ll have a child who grows up with the expectation of being responsible for both siblings, not just one.

Then not only will you have a child who resents their siblings but you as well....

It’s a terrible reason for having another child, and tbh if the condition is genetic that could be a valid reason not to have another child.

I have a disabled sibling but also non disabled siblings. My disabled sibling lives in a care home but we all visit and advocate for him. To be honest I am very happy I have siblings to discuss his care with.

I have an older brother with profound disabilities, and a younger brother also. My parents were the first generation to keep their kids at home rather than send them into institutions, 1960s. They were brave people.

We had a wonderful childhood, although I know now it was very hard sometimes for my parents. My mum always told me and my younger brother that we had not been born to care for our older brother, that she wanted us to just love him, advocate for him and look over him as we would with any other sibling. We were never expected to do any hands-on care or even push his wheelchair. I know now that this was a conscious decision by our parents. Despite this, I can distinctly remember, about 7, the realisation of what death was, and what it would mean for me and my brothers.

This was all fine, apart from the fact that younger brother never really had any interest in anyone except himself, and grew up to be a very difficult person with no empathy and a very difficult relationship with everyone in his family and everyone he has ever met!

My mum became very ill for a while when I was about 18, and I stepped up and helped with whatever was necessary, from housework to helping toileting my brother, because I loved my brother and my mum and wanted to do it. Younger brother never bothered.

I can honestly say that every single important decision I have ever made in my life has been dictated by my sibling to some extent. I broke off an engagement as the man did not like my sibling. I never went on the gap year trip with my mates as my mum was sick. I married my husband (partly!) because him and my brother were instant friends and are still very close.

Things turned very bad when my mum died suddenly at 65. My Dad could not cope with brothers physical care at all, and a lot was left to me. Younger brother has never really done anything practical to help, and yet he resents the relationship we have.

Things are great now after a very very difficult time, our brother lives in his own supported living flat with lovely carers and has a really nice life. I take care of his finances and watch over things, but we have a brother and sister relationship now instead of a parental/child one like we had to have for a while. Younger brother visits now and again for the odd half and hour, but has no meaningful place in his life. If I had not had my wonderful husband and my cousin to support me, I would have coped at all.

I have gone on too long, but I suppose my point is, don't have a child to support the other sibling, because the relationship my mother wanted for us never happened, and may not happen with yours either. Have a child because you want one.

Then not only will you have a child who resents their siblings but you as well

I agree. Children shouldn’t be carers nor created to be adult careers to siblings imo. Their life is their own to choose their path, it’s not for others to decide for them and take away or limit choices.

I have a DC but i also have just had baby no.6 my DC is the middle child my older children are more than happy to help with my DC when we die or get too old.
Life is harder with a DC but i diddnt let it stop me having more children.

@Straysocks That was a beautiful post, and reminds us all of some of the positive things that it’s important to remember around this topic

OP, in answer to whether it would have been good to have another sibling... hard to say. Being the single NT child enabled my parents to fund private school and I subsequently went to Oxbridge, I’ve had wonderful holidays and other material perks, and I had the undivided attention of my parents when my brother was in respite care. All of that would have been more challenging with another sibling on the scene. But if we’d gotten on really well, maybe it would have been a big help - both emotionally and from a practical (babysitting!) perspective. Hard to say; so much depends on the relationship between siblings.