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Caring for siblings of children and adults living with Tuberous Sclerosis Complex

According to the charity Sibs, there are over half a million young siblings and at least 1.7 million adult siblings in the UK who have grown up with a disabled brother or sister.

Unfortunately, it is easy for siblings of children and adults living with complex needs to be overlooked, despite the best efforts of their families and loved ones. For families affected by Tuberous Sclerosis Complex (TSC), it is important that siblings of people living with TSC are equally valued, have their needs met and get the opportunity to reach their full potential.

Here, we have provided an overview of advice and guidance on how you can ensure that a sibling of someone living with TSC lives a happier and more settled life.

How might the lives of siblings of people living with TSC be different to other siblings?

Due to the often all-encompassing nature of TSC, the needs of a sibling can sometimes be accidentally overlooked for issues related to the child or adult living with TSC. Although it can be very difficult or often impossible, families should try to avoid this from happening when able to do so.

Advice for helping siblings

Siblings of all ages should be given the time and opportunity to talk about how they are feeling, as some siblings minimalise their own problems. It is better for a sibling to have your full attention for a short period of time than a longer time with lots of distractions. In time, this could help to improve family life.

When planning an activity or day-out for the family, it is important to remember to keep in mind the needs and interests of the sibling as much as possible. Sometimes this can be hard to arrange, as not all places will be suitable, but shared activities where everyone enjoys themselves can help to cement positive family relationships.

What are some of the signs that a sibling needs extra attention?

Although siblings are often extra thoughtful, understanding and particularly aware of other people’s needs, they can also have greater feelings of guilt or anxiety, particularly around their brother or sister and TSC. Siblings sometimes can feel like they need to be perfect, so off-set the work of their parent(s) in meeting the needs of their brother or sister. The sibling might feel like they can’t make mistakes, as this would add to the burden of parent(s).

How should TSC be explained to siblings?

The Tuberous Sclerosis Association (TSA) recommends that siblings learn about TSC at a pace that they can best understand. It can sometimes be helpful if the whole family can go to hospital appointments to meet staff and have a greater understanding of what happens at the clinic.

Try to answer all questions from siblings honestly. For younger siblings, SCOPE has a great list of story books to help understand a disability.

As siblings become older they can be concerned about the future and what will happen to their brother or sister. This is natural, and it is good if they are included in any discussions about the future care of their brother or sister.

It is important to ask each sibling if they want to help with the care of their brother or sister and not to assume that they will want to help. Helping their brother or sister could be a big undertaking to the sibling, even if it is only small tasks.

Challenging behaviour from siblings

Siblings can sometimes feel frustrated, resentful or angry if they miss out on activities or trips as a result of care needs for their brother or sister. These emotions may build-up over time and it might not be immediately clear why the sibling is upset. It can be helpful to ask another relative or friend to take the sibling to activities and to make it a special time for them.

Siblings can get embarrassed at their brother’s or sister’s condition, especially if their brother or sister’s behaviour is challenging. They may want to explain TSC to their friends but do not know how to. It might help if you work out a few sentences about how TSC affects their brother or sister and put it on a card that they can carry with them.

Where can I access support for siblings?

Sibs is the UK charity for siblings of disabled children and adults. They offer information, support and training. Sibs also have a dedicated site for young siblings with information and tips alongside a safe and moderated chat forum.

Many siblings who are also young carers can find support through a local young carers service.

The TSA’s support team is here to help support all members of the TSC community, including siblings of people living with TSC.

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£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

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