If you are caring for someone who is behaving in a challenging way, the best starting point is your GP who can refer you on to an appropriate service. Don't be deterred if your GP is dismissive to start with. You know your child. If you think there's a problem push for a referral.
Emotional and psychological support for people with learning disabilities is quite a specialist area and, again, your GP is a good starting point for a referral. It may also be worth contacting your local NHS mental health trust, if you are fortunate enough to have one in your area. It is possible to access one outside your borough if yours doesn't have one.
Young people who develop emotional or mental health problems may be referred to child and adolescent mental health services (CAMHS team) or a psychiatrist or psychologist within a learning disability service. When referring adults, GPs sometimes use the criteria of an IQ of below 70 and adaptive behaviour difficulties.
Keep calm and try not to seem angry or upset, even though you might be feeling it. The person you are caring for will probably be sensitive to your mood.
Find out the reason
Remember there is a legitimate reason for someone's challenging behaviour. Try and find out what that reason is and what that person needs or is trying to communicate.
Challenging behaviour may appear to occur out of the blue, but most people show signs they're becoming agitated or distressed before they lose control. Learn to recognise those signs and you may be able to defuse a situation before it arises.
Distraction often works - you should keep to hand a bag of familiar sensory objects or play a familiar/favourite tune.
Work on communication skills because frustration with making needs known is often the cause of difficult behaviour.
Loneliness can be a big problem. Work on creating a circle of friends or speak to your local social services department for advice.
Offering choices and encouraging decision making are important. Give the person you care for some control of their own lives.
Improving self-esteem improves behaviour. Always include the person you care for in conversations, explaining things clearly and reflecting respect in your tone of voice. Never speak about the person as if they aren't present.
Give a role
We all like to feel needed. Make sure the person you are caring for has an opportunity to contribute, even with things as simple as household chores. Always give plenty of positive reinforcement.
Make sure that every day has an element of fun and some stimulating experiences. Fun is important to everybody's quality of life.
You matter too
Take care of yourself and your partner. Don't isolate yourself - join forces with other parents and support groups.
The Challenging Behaviour Foundation
Provides information and support to parents and professionals caring for people with severe learning disabilities and challenging behaviour.
The Challenging Behaviour Information Sheets and DVDs
A publications guide on the Challenging Behaviour Foundation website. It provides a comprehensive list of publications on the subject of challenging behaviour produced by various different charities and other organisations.
Provides advice and information about tackling challenging behaviour. Helpline 0808 808 1111.
About Learning Disabilities
Information and advice about learning disabilities, including challenging behaviour.
This NHS site shows where mental health support services of all sorts are available in your area.
Offers occupational therapy, speech and language therapy and sensory integration. Sensory problems may cause challenging behaviour and dealing with these problems can help resolve the challenging behaviour.
Lorrine Marer, Behavioural Specialist
Teaches responsible behaviour, respect and co-operation through the use of descriptive praise and reflective listening. Also offers ADHD coaching.
Advice about making the most of services in your local area such as GPs, carer's centres, local authority children's services and adult services for people with disabilities. Offers support for carers who are looking after someone with challenging behaviour.
The Loddon Training & Consultancy
Runs a course for parents/carers of children who may have additional needs arising from a diagnosis or statement of Autism, Asperger's Syndrome, E.B.D, Special Educational Needs or challenging behaviour. The course offers practical tips and guidance for parents to support their child and their challenging behaviour and to openly discuss individual problems and meet new people in similar situations.
The Special Yoga Centre
The Special Yoga Centre is a Centre of Excellence for yoga therapy for children, with an emphasis on children with special needs. It offers a wide range of training courses, one-to-one yoga therapy, outreach work in schools, group classes and parent support groups.
Social Care Institute for Excellence (SCIE)
The SCIE has published three 'At a glance' briefings for family carers who are supporting people with challenging behaviour. The guides at aimed individually at adults, children and teenagers.
Offers various kinds of therapy to people with learning disabilities including counselling, cognitive behaviour therapy and psychoanalytic and psychodynamic therapy. Specialises in offering support to those who have experienced trauma or abuse.
Royal College of Psychiatrists
Readable and well-researched information for the public.
Institute of Psychotherapy and Disability
Develops, accredits and regulates psychotherapists who work with people with learning disabilities.
British Institute of Learning Disabilities Helplines
Offers helplines for a range of problems including bereavement, emotional distress, rape and sexual abuse.
Foundation for People with Learning Disabilities
Tips on how to make young people feel good about themselves, where to go for help if they develop mental health problems and support for carers.
Tavistock and Portman NHS Foundation Trust
Offers a range of therapies, including psychotherapy and family therapy for children and adults with a range of learning disabilities including autism and Asperger's Syndrome.
Offers family counselling.
Support for single parents including those who have children with disabilities.
Jewish Women's Aid
Jewish Women's Aid is the only specialist organisation in the UK supporting Jewish women affected by domestic violence and abuse. They offer counselling for women, children and young people.
TIPS FROM OUR COMMUNITY
These tips have been contributed by other parents, carers and professionals. We hope they will give you some ideas to try, but if you need further help why not send us a question and we will ask our JWeb community for their ideas.
Don't show your own stress
Here is a tip from my wise 12-year-old daughter on how she behaves when her teenage autistic brother is having an anxiety meltdown: "Keep calm, speak flatly, don't show your own stress in your face or voice. They don't know how to express themselves and they will mirror it back making the situation worse".
Do the angry stomp!
If your child or the person you are supporting is displaying aggressive behaviour, encourage them to engage in some intense physical activity instead (man, can I wash a floor when I'm angry!) Activities like doing the 'angry stomp', dancing hard, digging, walking briskly etc. Join in with them. You could likely both use the release!
It's OK to ask for help
The Challenging Behaviour Foundation is a great place to look for information and has a family linking scheme to put you in touch with someone who has been through it all themselves and is a trained family carer.
Don't reward challenging behaviour
Disengaging until the person settles can be very helpful. That way, you are not rewarding challenging behaviour with attention.
My husband and I play a game where we place bets with each other which of our 3 disabled children will waken / kick off etc. at what times. The 'winner' gets a treat from the other partner. Sounds silly, but making light of intensely stressful situations really does help us cope.
Give them space
When I am angry being in the same house as me can feel like you're invading my private space. Be aware of this when someone with special needs is angry because their sense of personal space can be much larger. Wait until they are calmer before you get too close.
Keep a journal
Keeping a journal and recording incidents can help you to look back and see if there are any patterns or contributing factors. It can also be a good thing to look through with the person you are caring for, talking about both the positives and negatives.
A “break card" can be useful for averting meltdowns. It gives a person the means to communicate their wish to leave an unpleasant situation. They simply need to hand the card over. Useful in school or out and about.
Find the message
Challenging behaviours are usually messages, work out what is trying to be said.
Mirror with humour
I've found the behaviour management technique of 'mirroring' i.e. adopting the same stance/ facial expression etc. of a person who is displaying challenging behaviour works brilliantly. The situation becomes humorous and I relax.
Release the energy
My son's behaviour went very bad as he started puberty. We found a punch bag helped loads. He used to yell at it too when beating it up! Also, lots and lots of scheduled exercise to get rid of some of the overload of stress/anger. We built it into his home from school routine as a daily thing.
Behaviour = communication
Behaviour = communication. Just because you care for someone who doesn't talk doesn't mean they aren't trying to communicate with you. And, if they're angry, it's probably because they trust you to still like them when they calm down.
Check your local Child and Adolescent Mental Health Service (CAMHS) to see if they have learning disability specialists who can help with difficulties like challenging behaviour and other behavioural problems. Many places now have dedicated teams with learning disability nurses, psychologists, and other professionals who can offer assessments and support.
In the car
Divert challenging behaviour in the car by opening all the windows, turning the music up very loud or singing a very silly song. The unexpected can often buy you a couple of minutes to resolve the issue or pull over in a safe place.
Keep it calm
I find calm but assertive instructions and body language are the most important assets when dealing with any challenging behaviour. Any more emotion into an already emotional situation can only cloud judgements and cause greater confusion.
Lower your voice
When faced with someone who is aggressive and shouting, keep your face neutral and lower the volume and pitch of your own voice. Nine times out of ten, they will quieten down to hear what you are saying.
The right amount of sleep is important. Ideally, we need a minimum of 7/8 hours quality sleep each day.
Loneliness is one of the main causes for challenging behaviour.
Puppets can do the job
Beth’s behaviour is often bizarre, challenging and inappropriate. She didn't react to reprimands or instructions in the way that other kids did, so I hit on the idea of using her favourite toy, Minnie Mouse as a puppet. Minnie asks Beth to pick up her clothes, or eat her dinner or sit quietly next to her. And Beth does! If I had asked her, she would have refused. Minnie also helped Beth to read, understand something about the world and taught her to play games that made sense.
It’s so easy to do everything for Toby including making decisions for him. Since I started giving him the chance to do more himself and to make decisions his behaviour has improved.
It’s so easy to forget drugs have side effects. In our case one of them was making Neil feel groggy and hungry, and not being able to communicate this caused him to self-harm. Do check regularly this aspect.
Emily has issues with anger and frustration. What I've always done is to try to hold on tight, because she self-harms. I talk gently and quietly into her ear the whole time, and she may well be screeching at me to let go, but I don't. Eventually when she's quiet, she's generally really sorry and upset, so I just hold and cuddle, and don't make a big deal of it. We also use a stress-ball to squeeze and an inflatable punch bag!
We worked out what Chrissie’s sensory needs are and asked an occupational therapist to put together a short menu of ideas to help her. For example, when she feels stressed she has a doll which she squeezes / twists /bites which has stopped her from squeezing/twisting my skin and hurting me.
Stop the world
When Jake throws something or throws himself on the floor - then everything is turned off TV/ iPod - take all distractions away - and we say "Ok Jake nothing is happening , no one is talking about anything until you stand up, pick up xxx, and then we can carry on" that always works like magic!
Before the going gets tough....
We intervene early when we see warning signs - we have a range of distraction techniques which sometimes work.
Music calms Tina down – try singing or putting on a CD. I hope this works for you too.
Check it out
When Anthony starts with challenging behaviour we always first check that he doesn’t have a medical problem like a headache, toothache etc.
Advice from professionals
We are also having help from an expert Asperger’s centre which is a tertiary service. They are supposed to tell the local psychiatrist what programme of care and support my son's needs. It might be worth enquiring about one of these specialist services in your area.
We have an autistic son and have had some success with ABA therapy which helped with enforcing boundaries etc. Here is an overview.
What about you?
Wendy is very sensitive and picks up on my moods. If I am stressed or feeling down her behaviour gets worse. I really recommend you do what you can to take care of yourself as well. If you put just a little bit of energy and time in to yourself it will help both of you.
Lighten the situation
When Sam was 14 and already taller than me, he could be very violent. He once had me up against the wall gripping my throat. I maintained eye contact, lowered my voice and informed him in calm modulated tones that he could strangle me if he wanted, but did he know he didn't have any trousers on? He looked down, laughed and let go!
Written by: The JWeb Team