My first insights into the world of difference and disability came through family members with neurodivergent conditions and physical disabilities. I worked as a support worker for a brain injured gentlemen when I was thirteen. My mother and my Grandmother were both passionate inclusionists, people who are differently abled have always been a part of my life, and my life has been the richer for that. I have worked supporting learners with additional educational needs and have been a teacher at a school for students with severe and profound special educational needs and disabilities. I briefly inspected schools for their provision for students with additional needs and I have a masters in special education. Suffice to say I have a good handful of professional and personal experience that informs what I do. But, I also draw on two other enormous sources of information: research and my amazing Hive Mind.
I am a big geek and love to hunt through the research achieves for information relevant to the people with profound and multiple learning disabilities whom The Sensory Projects focus on. It is no surprise to find that a geek as big as me also spends a lot of time online, and as The Sensory Projects have run on I have had the joy of becoming connected to more and more people in the social media world through the much maligned Facebook, Twitter and LinkedIn. These people are amazing, any are parents to exceptional young people and adults, some of professionals, I even have a few researchers on twitter. I refer to them collectively as my Hive Mind, and they are ace. If I get a question, for example I am writing this in the summer holidays so I will get a question from a teacher planning lessons for children with complex disabilities asking for ideas of something fun to do. I can answer that question, and I will come up with a few ideas…but if I turn it out to the Hive Mind – oh my goodness it is amazing what they know!
The best description I have for myself now is a professional yoghurt pot telephone, I take the knowledge I glean from the research archives, from my own experience and from my amazing Hive Mind and I pass it on to others, and as I do so I collect new information from them and pass it back down the line. I have written books about sensory stories, sensory conversations and multisensory rooms and The Sensory Projects publish a range of sensory stories. I have also had two inclusive children’s books published, one features a lead character with autism and the other a protagonist with Downs Syndrome, both are sensory stories so can be experienced through the senses, through cognition, or through a mixture of both – basically everyone can be included and it is loads of fun. The title of this article promised the projects in a nutshell – it was an impossible promise! They are a snowball racing onwards, what started as just one project: The Sensory Story Project of just five stories, has become five projects and growing. I would love for you to watch this short film of the most recent project: The Sensational Sensory Selection Salon:
Come and join the Hive Mind, I would love to virtually meet you and pick your brains! Have a nose around Sensory Projects you’ll find a load of free resources to download, including inclusive planning which extends from old skool P level 1 all the way up to national curriculum levels, leaflet guides to sensory stories and sensory story sharing, a guide book to maximize the potential of your sensory stories, sensory games to target early sensory development and more….it’s the snowball thing, with the projects there is always more. I am enormously lucky to get to do the work I do and grateful every day for the opportunities I have. One of the best things I have been a part of is one of the things that sounds the least exciting: The Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities if you work supporting people with profound disabilities it is a must have and is once again free to download from my website.
Down syndrome is a genetic condition. It is not an illness or a disease.
Our bodies are made up of trillions of cells. In each cell there are 46 chromosomes. The DNA in our chromosomes determines how we develop. Down syndrome is caused when there is an extra chromosome. People with Down syndrome have 47 chromosomes in their cells instead of 46. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21.
Although we know how Down syndrome occurs, we do not yet know why it happens. Down syndrome occurs at conception, across all ethnic and social groups and to parents of all ages. It is nobody’s fault. There is no cure and it does not go away.
Down syndrome is the most common chromosome disorder that we know of. One of every 700-900 babies born worldwide will have Down syndrome. Down syndrome is not a new condition.
People with Down syndrome have:
Because no two people are alike, each of these things will vary from one person to another.
A test for Down syndrome can be carried out before a baby is born. Down syndrome is usually recognised at birth and is confirmed by a blood test. It was named after Dr John Langdon Down who first described it.
Most of the young people growing up with Down syndrome today will lead quite ordinary lives in the community. Some people with Down syndrome may not need much help to lead an ordinary life, while others may require a lot of support.
Down syndrome is the most common cause of intellectual disability that we know of. Everyone who has Down syndrome will have some level of intellectual disability. There will be some delay in development and some level of learning difficulty. Because everyone is unique, the level of delay will be different for each person.
When a baby is born, there is no way to tell what level of intellectual disability the child may have. Nor can we predict the way in which this may affect a person’s life. However, we do know that having Down syndrome will not be the most important influence on how that person develops and lives their life. Instead, what happens after birth will be much more important and family, environmental, cultural and social factors will shape their life, just like everyone else.
For many people with Down syndrome, speaking clearly can be difficult. Although a lot of people with Down syndrome speak fluently and clearly, many will need speech and language therapy to achieve this. Very often, people with Down syndrome can understand a lot more than they can express with words. This often means that their abilities are underestimated, which can make them feel frustrated.
Some people with Down syndrome will find it very difficult to develop language skills and speak clearly. This may be made worse by hearing loss.
Down’s Syndrome Association (DSA)
Information, support and training for those affected by Down syndrome.
The Down’s Syndrome Research Foundation UK (DSRF)
Charity for medical research into Down Syndrome.