FAQ - Parents

“I have a difficult relationship with my mum, who lives with and cares for my brother who has Down’s Syndrome. My mum has stopped me from seeing my brother and won’t let me in the house. I’m devastated. I know he wants to see me. Can she do this?” – Adult sibling

No, your mum cannot prevent you from spending time with your brother without good reason.

If your brother is over 16, he is seen as an adult in his own right in terms of the law. This means that it is his choice, and your choice, to have a sibling relationship. As his carer, your mum would need good reason to prevent you from spending time together. For example, if your mum had evidence to believe that you were a safety risk to him.

Contact Adult Social Care at your brother’s local authority. Tell them you are being prevented from seeing him, and that you believe this is not what he wants. A social worker should intervene, and should support you to have contact with your brother on a regular basis.

The social worker should ask your brother if he wants to see you, not your mum. If the social worker is unsure if your brother has the ability to make this decision, they may complete a mental capacity assessment. If your brother is deemed not to have the ability to make the decision to see you, a best interests decision should be made. This decision should take into account all the evidence from people closely involved in his care.

You know your brother inside out. You know the way he responds to you when you walk into a room, how he lights up, the way he smiles and laughs when you share an in-joke, a favourite programme or a song. Write down every piece of evidence you have that shows he wants to see you and demonstrates the strength and importance of your relationship. If your relationship is questioned, you may need this evidence to ensure the right decision is made to help you both to have contact again.

If your sister is still living with your dad – and always has done – it may be very difficult for him to imagine a time when she will not be there. It’s a really tough topic to address. Approaches you can try are:

1. Little and often. There is a lot to consider with future care so break it down into small chunks. For example, ask your dad one question per week. Take care over the time, place and way that you bring up the topic. Change takes time. Try this over the course of a year.
2. Come back to it at a later date. If you feel the little and often strategy isn’t working, wait a while before raising the topic again. This may feel counter-intuitive and exactly the situation you are trying to avoid – but people take action in their lives for different reasons. It may be easier to engage your dad in a discussion when there has been a change in the situation e.g. your sister’s needs have changed, or your dad’s ability to cope or provide care has changed
3. Identify someone else who can raise the issue. There may be someone else who can start the conversation with your dad – another sibling, another relative or a trusted professional. They may be able to raise the topic whilst you are with your dad or they may be able to persuade your dad to talk to you about it.
   

Tell your parents what you need. Whilst it may feel obvious to you, it may not be obvious to them. It also may be hard for them to acknowledge that they haven’t met some of your needs up until now. Take it a topic at a time and make your suggestions specific.

Consider the difference between:

“You always talk about my brother, but I want you to talk more about what’s going on in my life”

and

“Let’s talk about my brother first for about fifteen minutes and then let’s talk about my children; job-hunting; decorating…”

The second statement clearly explains that you want to discuss a specific topic in your own life and still provides space to discuss your brother.

You can’t change your mum’s behaviour but you can change your own.

Here are some ideas:

What does your brother think of how he is treated? If possible, start with a conversation with him about it and see what ideas he has for letting your mum know that he needs to be treated more like an adult

If your brother isn’t able to do this, can you try a more direct conversation with your mum about this issue? Think of specific ways you feel his life could be more like his adult peers. Break this into manageable chunks and bring up one topic at a time

If this doesn’t work, is there someone else that could raise the issue? A family friend or a trusted professional like a learning disability nurse?

Make sure you are aware of the difference between actions that would improve your brother’s life, and actions that you dislike but don’t actually impact him that much.

For example, it might make you cringe if your mum uses a childish nickname for your brother – but he may like this, and it may not have an impact on his wider life. On the other hand, your mum may discourage your brother from socialising, because she is afraid of him being hurt or bullied. This does impact on his wider life and is something that can be changed.

You’re not alone!

Many siblings automatically develop an identity as ‘the good child’ because:

It gives them rare moments of positive interaction with their parents.

They know it can be tough raising a disabled child and want to reduce the stress their parents feel.

They feel they have to compensate for the things their brother/sister and ‘achieve for two’.

Changing this behaviour in adulthood can be challenging, but there’s lots you can do to reduce your perfectionism. Here are some ideas:

Start small. Pick a task that feels safe and do it slightly less well than you usually do. This may feel terrifying but pay attention to the results. How do you feel? Increase to a slightly more challenging task and eventually work up to interactions with your parents.

Approve of yourself first. When you share a personal disappointment with your parents, make sure you have worked through it yourself first. This will give you time to form your own opinions and build your self-esteem before you hear their opinion.

Get more support. If you find perfectionism is causing you significant anxiety, consider seeing a counsellor to explore it further. Join a sibling support group to hear from other siblings who have struggled with this too.

There’s a difference between perfectionism and healthy progress. Perfectionism is about your need to receive approval from others (“I want my parents to say how proud they are when I get this promotion”). Healthy progress is about your need to improve, for your own development (“I want this promotion because I enjoy my job and I’m keen to take it further”). You can let go of perfectionism and still aim for healthy progress.

Read a longer answer to this question in our guide Talking to Parents

It’s common for siblings to have a different opinion to their parent on issues around their brother/sister’s care and support. Your perspective matters.

Here are some ideas for working through disagreements:

Get calm. You and your parent both care deeply about your sister and this can make conversations more heated. Try and stay as calm as possible so that you can focus on the topic, not the emotions.

Listen and ask more about their reasoning, as this will put you in a more informed position to negotiate.

Prioritise. If you’re disagreeing on several topics around your sister’s care, address which are most important and discuss those first. If there are topics that are more superficial and you can abandon them, then do so.

Get support. Don’t underestimate how emotionally and mentally draining having intense conversations can be. Make sure you are supported before and after the conversations. Share with your sibling support group or a trusted friend/partner.

Consider counselling. Some siblings, like Olivia, have joint counselling with their parent. If your parent doesn’t want to attend, then go by yourself. This may sound pointless, but talking about it with someone neutral can help you to re-enter the conversation from a fresh standpoint.

Take action. In some cases, the issue you disagree on may be a safeguarding concern. If you feel your sister is at risk of abuse or neglect, you don’t need your parent’s opinion or permission to report this yourself. Read our advice on taking action on safeguarding concerns.

It sounds like you are part of the sandwich generation – caught between caring for older parents and your own children. When an adult sibling is part of the sandwich generation, they often have the additional responsibility of being involved with their disabled brother or sister’s care.

Here are some ideas:

Consider what caring tasks you can outsource. Many siblings of the sandwich generation can feel so rushed that they aren’t able to take the extra time needed over conversations with their parents. Outsourcing tasks will free up some of your time to address this e.g. online food shopping or sharing the school run with a friend.

The parent-child role reversal can be difficult for parents, and as a result they may be resistant to accepting your advice. Don’t offer advice unless it’s asked for – provide encouragement and support instead. Advice may be best given from someone else e.g. a family friend or professional.

Read our guide Talking to Parents. Have a look at the conversation strategies when you’re considering raising a particularly sensitive topic with your older parents.