FAQ - Behaviour that challenges

‘Behaviours that challenge’ are a range of behaviours that result in harm to either the person displaying the behaviour or those around them. Harm may include physical and emotional impacts and the person (or their family) being unable to access the community. Examples include:

• Eating everyday objects such as clothing, pillows, cigarette butts
• Destructive behaviours including throwing, breaking or tearing objects
• Self-injury like hand biting, eye poking or head banging
• Hurting others through biting, pinching, hitting, head butting, hair pulling
• Repeatedly screaming, shouting and swearing
• Other behaviours such as smearing faeces, spitting, removing all clothing in public, running away

Find out more:

• Sibs guide Behaviour that challenges
• Challenging Behaviour Foundation
  

It’s really important to seek advice because the behaviour is happening for a reason. A change in behaviour (such as increased aggression) may be reflecting a change in a person’s world. Both your mum and your brother need more support with this situation. Gaining a Functional Assessment for your brother, led by a trained professional working in partnership with family members, is a vital step.

In the short term, talk to your mum first and highlight the vulnerable position that she and your brother are in. If it helps, show her the Challenging Behaviour Foundation website which has a range of resources and case studies from other parents who have experienced similar situations. Encourage her to contact the local adult social care department and request an assessment for your brother so that his communication needs can be looked at long-term. This might be by a speech and language therapist or psychologist.

If you feel your mum won’t contact adult social care, you need to report this yourself urgently so that she can receive more support with the situation. Find out how to do this here.

It’s important to understand the reasons behind the behaviour for change to take place. Gaining a Functional Assessment for your sister, led by a trained professional working in partnership with family members, is a vital step. A change in behaviour (such as the onset of smearing faeces) may be reflecting a change in a person’s world, for example:

• Physical pain or discomfort
• Mental health or emotional difficulties
• Frustration or confusion around a change of environment or staff
• Distress or boredom in particular situations
• Exposure to difficult life events including abuse

In the short term, start by keeping a record of when and where your sister does this, and when it started as this may help identify patterns and recent changes in her life. Ensure that physical causes (e.g. constipation) are ruled out by arranging a GP visit for your sister. Your sister’s GP, or local adult social care department can then refer her for a Functional Assessment of her needs. Findings from the Functional Assessment can be used to help determine the best way to support your sister, to make her life better and reduce the likelihood of behaviours that challenge. This approach is called Positive Behavioural Support (PBS).

Find out more:

• Challenging Behaviour Foundation
  

It’s great to hear that you and your sister have such a positive relationship. The fact that her behaviour is less challenging when she is with you suggests that you are able to communicate well and that you’re meeting her needs. This is a valuable skill to have developed and honed. Don’t underestimate the significance of this achievement for both you and your sister.

If you’re feeling under strain, it suggests that the amount of time you are spending with your sister is not sustainable. This isn’t a good plan for you or your sister. If the strain were to develop into mental health conditions, such as depression or anxiety, you may no longer be able to provide that support at all. It’s important that you don’t accept depression and/or anxiety as a normal part of caring, but as health conditions that can be treated and supported.

Just because you are the person who communicates most effectively with your sister doesn’t mean you’re the person who is entirely responsible for her care. It is important to remind yourself of this when feelings of guilt arise.

Here are some actions you can try:

• Share the communication techniques you are using that are improving your sister’s behaviour with others involved in her care. Arrange a time to discuss this with all involved and teach them what you know. Allow them to practice these without you present. It may take time for all to adjust.
• Think about what time you do want to spend with your sister. What would be sustainable for you? For example, meeting every other Saturday rather than every week.
• Meet with your parents and sister to discuss this. Stress the importance of the need for a sustainable plan and how you will all benefit from this. Discuss options for how your sister can spend her new free time without you. Write the plan down and put it somewhere the whole family can see and refer to. If possible, use a format that your sister will understand too.
• Remind your family of the written plan that they can see and refer to. Changing a family set up like this takes time and it takes courage. It can be difficult for all involved to adjust. It is fairly inevitable that at some point, your parents or other family members may ask you to revert to the previous pattern. When this happens, remind yourself that the previous pattern was unsustainable and that you need to give the new one a try.
• Review the plan. If you, your parents or your sister find that the new plan is not working, arrange a time and a date to meet and discuss it. Doing this – rather than responding on the spot – gives you time to think about what you need and come to the meeting holding that in mind

You matter and you deserve to have your own life too.

The secure unit should be a temporary situation and should not be used as a long-term placement. If your concerns about how your brother is being treated are to do with the use of restraint or isolation, then you can question this. Ask to see the policy on restraint and seclusion and ask how your brother, you and your family will be included in the decisions around what methods are used to respond to behaviours that challenge.

As soon as your brother is admitted, a person-centred assessment and treatment plan should be started along with a Functional Assessment by trained professionals working in partnership with your family. This should involve your brother, you and your family and should have clear aims and actions. These assessments should be used to create a Positive Behaviour Support Plan – this is a proactive and preventative approach to addressing the behaviours that are challenging.

Staying informed is important – it reduces your anxiety and empowers you to ask further questions.

Find out more:

• “My family member has been sent to an inpatient unit – what do I need to know?” A guide jointly produced by Mencap, The Challenging Behaviour Foundation and Respond
  

Your stepbrother may be struggling to have certain needs met and is attempting to communicate those needs through his behaviour. Your sister is a child and should not be left to deal with this alone. This is a safeguarding issue for both of them.

Talk to your mum first and highlight the vulnerable position that your sister and stepbrother are in. Encourage her to contact the local adult social care department and request a trained support worker to stay with him when she needs to go out. Request an assessment for your stepbrother, so that his communication needs can be looked at long-term; a psychologist or a specially trained learning disability nurse should carry this out.

A social worker in children’s services needs to be aware of the danger your sister is in and her involvement as a young carer. A social worker in adult services also needs to be made aware of your stepbrother’s needs. If you feel your mum won’t contact social care, you need to report this yourself urgently so that they can receive further support with the situation. Find out how to do this here.

Many siblings have experienced the same – you are not alone. Children aren’t equipped to deal with these significant challenges at such an early stage in life and it can have a lasting effect into adulthood.

It’s important to:

1. Acknowledge that it may have affected you. Many siblings do not acknowledge this because they feel, or they were told, that their brother or sister “can’t help it”. Regardless of the cause, their behaviour still has an impact on you. Acknowledging that impact doesn’t mean that you’re blaming your sister in any way.

1. Acknowledge how it affected you. It may have been physical, psychological, emotional, social, and financial or a combination of these. You may have had limited opportunities as a child or been excluded from events as a family. Everyone’s situation will vary and it’s important to recognise the ways in which you were affected.

1. Seek support. Find a way to process your experiences in a way that works for you. This might be writing about them privately, or it might be sharing them with others at a sibling support group. Many siblings find counselling helpful.