When I began reviewing Sense’s personalisation training I didn’t imagine I’d end up talking about happiness. We had all of the trainers, facilitators and key movers and shakers together. The training is only one day and focused on giving people an introduction to the values and principles, an overview of some person centred thinking tools and the process of planning for a review, facilitating a person centred review, turning the outcomes into actions and writing good Plans.
As anyone who reads this oldblog, follows Sense on Twitter and/or Facebook will know, last week we launched our report ‘The Case for Play’ and began a conversation about why play is so beneficial for children who are deafblind. Last week was particularly important because it was Deafblind Awareness Week (DBAW) – a time when we focus on reaching a wider audience to raise awareness of deafblindness and Sense’s work.
We decided to make this year’s DBAW about play for a few different reasons. Firstly, we know from our work with families that play is important to them. Second, for people who don’t know much about deafblindness, play is a recognisable concept that is an easy way to introduce them to what deafblind children can achieve and some of the challenges they face. Finally, play is fun!
And we did have fun last week. We made balloon faces,
Did you know that Sense family centres offer a range of services for deafblind and sensory impaired children?
Across the country there are four family centres that provide local support to deafblind and sensory impaired children and their families. Each respond to local needs in different ways, but at the core there are a number of things that our centres provide:
- Family days – days for the whole family, where families come together and share fun times as well as catch up with the team.
- Parent/ carer groups – these are regular (weekly, monthly, termly) groups for parents/carers and their young children to play, sing and relax in a supportive atmosphere.
- Toy and resource libraries – Although some specialist toys can be really expensive, other non-specialist items are inexpensive and may not be thought of as typical play activities. Our toy and resource libraries allow families to borrow toys and equipment to try things out.
- Assessments – we provide holistic assessments addressing children’s multi-sensory needs. Whilst our centres provide specialist environments, families find that the atmosphere is relaxed and we can work to the child’s individual needs.
Parent groups are really important. They are a chance for parents to come together in a relaxed atmosphere to meet the Sense team and other parents and carers who face the same challenges as them. Whilst deafblindness and sensory impairment impacts on different children in different ways, there are lots of commonalities. Parents find talking to others is a chance to get a fresh perspective and to come up with their own solutions. It’s a chance to establish friendships and find out about play, communication and to have fun!
Maria Nunez is a developmental psychologist with research interests in early socio-cognitive development, autism, children with sensory impairments and developmental cognitive neuroscience.
“Joint Attention” (JA) refers to the spontaneous communication behaviours that children show around the first year of life where they produce gestures, exchange looks and coordinate their own attention with that of others in order to share something about the world. For example, a child who sees an aeroplane flying on the sky, looks at her mother, turns to look at it, points in the direction of the aeroplane and then looks back (smiling) at her mother, is showing a typical sequence of communication in JA.
Developmental psychologists have been studying infants’ Joint Attention for almost four decades. There are good reasons for this sustained interest. First, it shows a unique, species-specific, spontaneous ability in humans. Secondly, it shows a true milestone in communication that opens the possibility of sharing the world with others. Thirdly, JA serves as a developmental platform for other key socio-cognitive abilities and cultural learning that children acquire during the first years of their lives.
My son Jake has CHARGE syndrome. When Jake was born, he had to spend a lot of time in hospital. The medical professionals we spoke to were very negative about Jake’s future. We were heartbroken. But then an MSI consultant from Sense came to visit us at the hospital. While she was talking to us, she noticed that Jake would turn his head to look at me and would respond to my voice. She was so reassuring and gave us hope for the future. Sense has supported us ever since.
Jake is now 7. He is a very active boy – he loves to run, climb, jump and play. But it is not always easy to find play environments that can meet Jake’s needs. He needs constant watching as he does not have the same understanding of dangers as other children. Most play groups do not provide enough supervision to accommodate this. Also, local play groups for disabled children often do not have staff or volunteers with an awareness of how to meet the communication needs of a deafblind child.
When taking Jake along to play settings, we know we have to be flexible and sometimes compromise, but even then we have found that there are not that many places to choose from. Most mainstream groups or classes for children of Jake’s age are focussed on intensive learning, whereas he needs to enjoy the experience as well as to learn. There are good exceptions though, Jake has swimming lessons every week, where a teacher sings songs, claps and does lots of other things to get Jake to communicate. I know he learns during those lessons, and the learning is done in a way he enjoys and can respond to.
Debby Watson recently completed a PhD study in playfulness and children with profound and complex impairments.
What is playfulness?
Playfulness is one of those things that is really hard to define, but unmistakable when you see or feel it! In children with complex and profound needs, it can be a bit harder to spot because of physical, communication and sensory impairments, but it’s definitely there – in what’s been described in my research as when children ‘shine’. Often, it’s a case of knowing a child really well and being able to recognise their particular expression of playfulness. For one of the children in my study, you could tell that he was excited and playful if his eyebrows went up, his mouth opened wide and he vocalised more, stiffening his body. For others, it would be something different, like increased body movement or the eyes focussing and brightening. I would say that playfulness in children with complex needs involves several elements: a lift in mood; physical signs; increased awareness; increased motivation and a sense of fun and humour being present.
Why is playfulness so important for children with complex needs?
I think that children with complex needs experience a lot of very mundane interactions. In my study I found that for almost a third of the time that I observed them they were either waiting for something to happen, having physical interventions such as suction or were being positioned so that they could take part in an activity. All of these things are really important, but it means that there is less time for them just to be a child, being naturally playful. Children with complex needs differ from other children in that they often need support to access their playfulness – the playfulness is definitely there but some children need very ‘tuned in’ support in order for it to be recognised and encouraged.
Play is important for all children in their formative years as it provides an opportunity to explore, learn about and reflect on the world around them. For deafblind children, play is especially important as it provides an opportunity to explore whilst being safe and supported. Playing with different toys and textures can play a role in supporting children to expand their tactile sensory system – building up their ability to discriminate textures and to establish concepts in the world around them. Deafblind children can face specific barriers to their ability to learn about the world in this way, however:
Firstly, many commercially available toys today are designed with very limited tactile variety. They tend to be made of similar textures, mostly firm plastics. This means that they do not help children who are deafblind to develop their tactile discrimination ability from the earliest opportunity.
Many deafblind children are also ‘tactile selective.’ This means that they either are too sensitive to some textures (such as avoiding light, fluffy textures as they experience them as irritating) or not sensitive enough, in that they needed more information to register what they are feeling (such as preferring firm textures to press really hard into to feel the sensation). Some children may experience a mixed sensitivity, where they are under or over sensitive at different times of the day; different parts of the body; or have different responses to different sorts of textures.
Since the start of this year, I have been finding out about how easy it is for deafblind people to vote in the General Election and whether there are any barriers that deafblind people face at election time.
I started by researching the various methods that deafblind people use to vote. These include attending allocated voting stations, voting by post or through proxy (appointing another person to vote on your behalf) and using a braille/large print template.
I have found that many polling stations are still not accessible for deafblind people. When Liz Ball (Campaigns Involvement Officer in the Public Policy Team) was asked to share her views on voting and barriers to accessing elections she explained that,
“getting to the polling station is difficult so I now opt for a postal vote. And using a postal vote I have to get somebody to read the ballot paper to me and I have to ask them to mark the ballot paper on my behalf. Not being able to vote independently can be a serious problem-put people under pressure and make people feel that maybe actually the system is open to abuse.”
Molly Kearney, Parliamentary Manager
This week the five main UK-wide parties published their manifestos. Manifestos set out what each party intends to do if they are the main party of government after the election. They are the parties’ bid for your vote.
Many of the commitments set out in the manifestos have been trailed before, and if you’ve read Shivani’s oldblog, you’ll be familiar with some of them. But I still think it’s worth setting out what each manifesto says about policies that could impact on deafblind and disabled people because manifestos are the ‘official’ guide to what each party would do in government.
Before I get to the manifestos, though, I’d like to plug an e-action we’re running for a few more days, which asks you to send a letter to your local papers telling election candidates that every MP will have deafblind constituents. With three weeks to the election, there’s still time (just) to get your letter published in your local paper – and it will only takes a couple of minutes! Check it out here.
Over the next few weeks, the main political parties will make a series of policy commitments in the run up to the General Election. Some of these will impact on disabled people.
So far none of the parties have published their full manifestos, but they have been making announcements about what will, or might, be in them. I’ve spent some time looking at the commitments made so far by Labour, the Conservatives, the Liberal Democrats, UKIP and the Green Party, in the following areas:
- Health and social care
- Welfare and work