Children’s Mental Health Week: Supporting the mental health of children and young people with complex health problems and learning disabilities

Monday 1st February to Sunday 7th February 2021 marks this year’s Children’s Mental Health Week, the theme of which is ‘Express yourself’. For most of us, the COVID pandemic and resulting lockdowns have brought the topic of mental health to the fore. Many people are struggling, and this includes our children. In today’s blog, I wanted to talk a bit about children’s mental health, focusing on how we support children with complex health problems and learning disabilities, especially when they are non-verbal and may not be able to communicate their mounting distress. What is ‘good’ mental health? The World Health Organisation (WHO) defines good mental health as: “a state of mind in which an individual is able to realise his or her own abilities, can cope with the normal stresses of life, can work productively, and is able to make a contribution to his or her community”. According to the New Economic Foundation, there are five things we can all do to improve our resilience and mental wellbeing, in order to support good mental health. We can: 1. Connect with people 2. Be active 3. Take notice of our environment and experiences 4. Keep learning 5. Give to others However, for children living through a pandemic and isolating at home, some of these essential ingredients of good mental health may be harder to access or maintain. For example, some children won’t have seen their wider families for months or may be struggling with online learning due to a poor or non-existent internet connection at home. Mental health problems in people with learning disabilities A report from the Mental Health Foundation highlights that approximately one in 10 children and young people between the ages of five and 16 have a diagnosable mental health problem. For 16 to 24-year-olds, this figure goes up to one in six. Research also suggests that 25-40% of people with learning disabilities have mental health problems and that children with learning disabilities are six times more likely to have a diagnosable psychiatric disorders. The risks increase in those who are unable to express their feelings or communicate their mental distress, particularly if they have high medical needs. According to the Foundation for People with Learning Disabilities, the symptoms that indicate changes in emotional and mental wellbeing of people with profound and multiple learning disabilities usually take longer to be noticed. It’s typically a family member who will first sense that something is troubling their loved one, even if neither they nor the individual is able to articulate what. Accessing mental health support when you have a learning disability There are undoubtedly challenges when it comes to supporting young people with learning disabilities who are facing mental health problems. Talking therapies are widely used as one of the most effective forms of treatment across the general population but they may not be suitable for those with more complex disabilities. Also, it may be harder to access talking therapies at the moment due to a reduction in services and higher demand. Another option would be medication. However, most research into medication for mental health problems has focused on adults, so the benefits and side effects for children are less widely known. In addition, for young people with complex disabilities, it’s always important to consider how new meds might interact with other medication already being taken. Many mental health professionals feel that self-management is one of the most effective ways for people to cope with mental health problems. This looks different for every person but might include counselling, mindset work, exercise, a change in diet, lifestyle changes, spiritual practices such as meditation, support groups, identifying triggers and implementing individual coping strategies. But, again, young people with complex disabilities may find it difficult to implement many of the widely used self-management techniques. That doesn’t mean they can’t thrive or find techniques that work for them; it just means that they are likely to need the right support from people who understand the interplay of learning disabilities and mental health problems, as well as how to adapt the most common solutions. The first step is identifying mental health problems The Mental Health Foundation report I mentioned above says that, in children and young people who have difficulties with verbal communication, the first signs of mental health problems are usually changes in behaviour and behavioural problems, particularly behaviour that others might interpret to be “challenging”. This is something that I am becoming increasingly passionate about. As adults, we can be quick to give our children labels, seeing them as “difficult”, “troublesome”, “naughty”, “stubborn” or “spoilt” as just a few examples. I think we need to be very wary of labelling a child in this way. Instead, we need to ask ourselves, what is the underlying reason for the behaviour? Is the child unhappy, scared, frustrated, lonely or confused, for example? Most so-called challenging behaviours have an emotional cause. As parents and carers of children with complex disabilities, I think we have to be ever-vigilant to changes in behaviour. We should always be noticing what is ‘usual’ for our child and speak up whenever something feels out of the ordinary. The National Association for Special Schools (NASS) says that there are seven areas of a child’s life where we should try to work out the base line for what’s ‘usual’ for them so that we can notice changes that might warn of rising mental health difficulties. These seven areas are: 1. The child’s relationships – Who do they like to spend time with? How do they interact with others? What do they enjoy doing with specific people? 2. Behaviour – Is the child usually calm and relaxed? 3. Emotions – How do they show that they’re happy or sad? 4. Thinking and learning – What tasks do they enjoy the most? How long can they concentrate for? 5. Physical appearance - What’s their usual posture or skin tone? 6. Communication – How do they usually communicate? Do they make eye contact, use sign language or use gestures? 7. Daily activities – What do they enjoy doing? How do they usually eat and sleep? A wide range of internal and external factors can influence a child’s mental health. External factors could include loneliness, isolation, the weather, changes in staff, parental separation, missing school or a change in routine, for example. Internal factors can include things like hormonal changes during puberty, medication, pain and illness. Signs to look for It’s clear that spotting mental health problems in a young person with complex disabilities can be difficult. Common symptoms can include: • Increased tearfulness • Irritability • Change in appetite • Difficulty sleeping • Aggression • Social withdrawal • Unwillingness to communicate • Loss of interest in usually rewarding activities • Tiring quickly • Unresponsiveness to preferred people These are just a few examples. The Mental Health Foundation report that I’ve linked to is worth reading because it talks about how these symptoms can look in people with complex disabilities. Protecting Elijah’s mental health Naturally, I’m writing this with my 14-year-old son Elijah in mind. Elijah has been home almost non-stop since March 2020 due to shielding recommendations. When we have explored the possibility of him returning to school, it hasn’t been straightforward. You see, Elijah’s tracheostomy means that he needs suctioning on a regular basis and may need emergency suctioning in order to breathe in the event of a seizure. The only way this could safely happen at school is for Elijah to be taken in a designated separate room where suctioning could take place at a moment’s notice. But is this practical as the room would need to be deep cleaned between uses? For the time being, my boy continues to access as much schooling as possible via Zoom. Of course, it’s not the same. He’s no longer having his Eye Gaze sessions that were having such a positive impact on his communication. He’s missing out on school trips and sensory activities, as well as seeing the teaching staff and school-based healthcare professionals who are an important part of his circle. On the rare occasions Elijah has been able to go out, he doesn’t want to come home and that can be distressing for him too. Nearly 12 months ago, his world suddenly shrunk and Elijah doesn’t fully comprehend why. I’m currently having to self-isolate away from him so there’s that separation for us both to deal with too. I keep reminding his care staff that Elijah must always be included in conversations and told what they need to do before they touch him. It’s important that people don’t use his bedroom as a place for a chat where Elijah isn’t included. His mental health seems fairly robust right now but I am aware that I need to stay vigilant. I’m doing everything I can to maintain as much normality as possible and to stay optimistic that, like everything else in life, this pandemic will eventually pass. You can explore the work being done to support Children’s Mental Health Week at

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