Seashell in partnership with Stockport Council’s Sensory Support Services are holding free Sensory Story Socials for families with preschool age children with hearing loss/are deaf, vision impairment or multi-sensory impairment.
You will be welcomed by our specialist staff, who deliver these fun and informal sessions…join us and find out for yourself!
For more information or to book your place, contact: rosemary.turner@stockport.gov.uk
At Seashell, we transform the young lives of those with the most complex disabilities from across the country.
This report gives a voice to the people we support, and to our colleagues, partners and funders. Together we are building a brighter future, not just for today or tomorrow, but for generations to come.
Deafblind Awareness week is all about learning about what life is like for those who are deafblind, challenging misconceptions, and celebrating the achievements of people with multi-sensory impairments.
From 24th – 30th June, the MSI community get together to celebrate Deafblind Awareness Week. The week is held at the end of June every year, to mark Helen Keller’s birthday – one of the most well known deafblind people in history. She campaigned tirelessly to improve the treatment of deaf and blind people, raising awareness of sight and hearing health.
Here at Seashell, we support many children and young adults with multi-sensory needs from across the country, often from a very young age. Our team of Qualified MSI Teachers, Speech and Language Therapists, Occupational Therapists, Audiologists, and Habilitation Specialists work together to deliver a holistic approach to supporting this unique population of learners.
We also deliver training and support to children and young adults with MSI, and the professionals who support them. From Personal Learning Programmes and Advisory Support, to our newly launched Mandatory Qualification for Multi-Sensory Impairment Postgraduate Diploma. You can find out more about our range of unique MSI Support Services here.
This week we have lots of activity happening on campus to mark Deafblind Awareness Week….
Firstly the Seashell Sensory team are holding a Deafblind Café! Refreshments will be available for staff to enjoy while wearing sim specs, sleep shades and ear plugs to help us experience what it is like to eat and socialise in a noisy environment with reduced vision and hearing.
Next, College staff and students have organised a Sensory Pride Parade, to celebrate both the LGBTQIA+ and Deafblind communities, with activities to engage all the senses along the way.
Want to learn more about Deafblindness and supporting someone with multi-sensory needs? Experts from our Seashell Sensory team have also created a series of blogs, delving into different aspects of understanding and supporting someone with MSI.
Click here to read about Cerebral Visual Impairment(CVI).
Click here to read more about how we use our Audiology Clinic to support Deafblind learners.
Click here to read more about the role of the Intervenor.
Click here to read more about introducing Deafblind learners to New Environments.
Deafblindness is a unique disability affecting a wide range of people from babies to the older generation. It can be congenital (from birth) or acquired (occurs later in life) and varies in its severity and impact on the person’s access to communication, mobility and their environment.
What is Usher Syndrome?
Usher Syndrome is a leading cause of acquired Deafblindness across the world, with approximately 10,000 people with the condition in the UK alone (data from 2010). Advancements in genetic testing and these tests being more readily available are resulting in more babies and young children being diagnosed with Usher. It is a condition that causes varying degrees of Deafness from birth with sight loss occurring later in life, and often affects the young person’s balance.
The type of Deafness associated with Usher is sensorineural Deafness which is a problem with how the inner ear or auditory nerve works. Some people are fitted with cochlear implants or hearing aids to support this. Retinitis Pigmentosa is the visual impairment associated with Usher Syndrome. This is a progressive visual loss whereby the young person will first show signs of challenges in dim light or at night (night blindness) progressing to loss of peripheral vision.
The extent to which a young person with Usher Syndrome will lose their vision is very unique to each individual. Some may retain some degree of useful central vision, whilst others may go blind with no functional vision.
What are the different types of Usher Syndrome?
Type 1
Type 2
Type 3
Profound hearing loss or deafness at birth.
Moderate to severe hearing loss at birth.
Progressive hearing loss in childhood or early teens.
Decreased night vision by age 10, progressing to severe vision loss by midlife.
Decreased night vision by adolescence, progressing to severe vision loss by midlife.
Varies in severity and age of onset; night vision problems often begin in teens and progress to severe vision loss by midlife.
Balance problems from birth.
Normal balance.
Normal to near-normal balance in childhood; chance of later problems.
Children and young adults are diagnosed with 1 of 3 types of Usher Syndrome, often identified through genetic testing. The severity of Deafness and severity and onset of vision loss is different with each type.
More recently a fourth type of Usher Syndrome is being diagnosed which is characterised by late onset vision loss (from midlife) and late onset Deafness (from late teens to midlife). This type is not thought to be linked to challenges with balance.
Living with Usher Syndrome
Even though a young person is diagnosed as having a certain type of Usher, each person will go on a completely different journey, experiencing sensory change and loss at different times, and processing and adapting to these changes in different ways. No two people with Usher Syndrome are the same.
Children with Usher Syndrome are often late to walking due to the challenges faced by their Deafness or by the Vestibular Dysfunction linked to the condition.
Living with a lifelong, changing, progressive condition is a rollercoaster of emotions for the young person and their families. They often say that just as they are accepting the condition, their vision changes and they are “right back to square one again”, having to relearn skills and find different ways of doing things. Challenges change as the young people move through their education and into adult life but with the right support in place, people with Usher Syndrome are capable of living successful, independent and fulfilling lives.
Here at Seashell, we do our bit to offer support for ordinary living for those with sensory related disabilities and even offer sensory training services to help people living with sensory impairments.
How Seashell can help
Seashell Trust is a UK-leading disability charity and specialist in supporting children and young people with complex difficulties, disabilities and additional communication needs. We have harnessed this unique expertise to create a range of specialist assessment, support and disability training services that we provide to families and organisations across the education, health and care sectors.
To find out more about what we do and who we are, don’t hesitate to get in touch on 0161 610 0100 or email us at info@seashelltrust.org.uk.
Royal College Manchester moved into Dockray, the former Royal School Manchester building in September 2023. It was a challenging time for our team, as we moved the entire college across campus, while welcoming new staff team members, as well as a large intake of four students with MSI.
Four of the students within the Deafblind group had previously accessed Dockray when it was home to Royal School Manchester, whilst one new student joined the group. We did wonder how our new environment would work for us and the students.
On the first day in the college building, one student appeared to recognise the space. He wanted to rapidly map the building, both upstairs and downstairs and took himself to the room where he was previously based as a school student, taking staff with him. He explored the resources that were in the room and once it was clear to him that this was now a storage room, he accepted. Now he was familiar with the environment, he quickly accepted his new classroom downstairs, as well as his separate sensory diet room, which he accesses for regular short periods through the day. Another student also seemed very happy to be back in her old familiar room!
Within our new environment we have worked on building basic daily routines and are encouraging students to map their area, building their orientation, mobility and independence. We can already see good progress, with one student now able to map from the classroom to the kitchen with just a touch reassurance on her back. Another student is able to navigate to the gym when presented with his OOR (object of reference).
Although we still have a long list of things to do to create the perfect environment (!) we have made great strides. We are still building on students’ workspaces, which aim to encourage independent access to resources and activities. For one student, building a storage system of tactile labelled activity boxes which are stored in consistent locations has been a great success. Another student has a new OOR board which is located on the wall in her workspace – she is just starting to find the board independently.
The expertise of our Habilitation Officer, who knows several of the students, has really helped with the transition, and the support and training available to our staff has been invaluable. As a result, we can clearly see that the students are now settled and making good progress.
Written by : Debra Lally (Royal College Manchester Advanced Practitioner) Liz Shaw (Royal College Manchester Tutor)
Deafblindness is a unique disability; it is not simply blindness plus deafness. The impaired senses cannot compensate for one another. It is a distinct disability, which impacts on the individual’s ability to access information, communicate with others, develop independence and mobility. People who are Deafblind require specialist support provided by a trained MSI Intervenor.
An Intervenor is a trained professional who acts as the “eyes” and “ears” of a person who is deafblind, providing specialised communications services and supports.
The Intervenor works consistently with the Deafblind person to facilitate access and reduce them becoming socially isolated and support them connecting with their world. The person who is Deafblind is likely to have some useful residual vision and hearing but needs to be taught how to use the information they are receiving through their distance senses effectively. The Intervenor will also support them to learn how to integrate this with all the other sensory input they are receiving including tactile, haptic, kinaesthetic, olfactory and gustatory. Without this there is a real risk of them functioning at a level which is far below their capabilities.
The basic role of developing and skilling Intervenors is the same in both home/community settings and in educational settings: providing access to visual and auditory information and access to communication, facilitating relationships with others, and promoting independence. The role of the interveners is to support and provide sensory access to the learning and everyday activities and implement the accommodations and adaptations needed for them to access.
Intervenors motto is “To do with and not for!” as this allows the Deafblind person to have confidence and a sense of agency!
Written by Veena Ramrakhiani. Qualified Teacher of Multi-Sensory Impairments/ Deafblindness; Seashell Sensory Support Team
Find out more about our popular Intervenors Course here.
As part of Seashell’s campus transformation, our Audiology team were given an opportunity to design a industry leading Audiology Clinic within the new Moulding Foundation Building. Using our specialist knowledge and understanding of children and young adults with the most complex needs, the team played an integral part in making this facility as accessible as possible for not only our students with hearing impairments, but our deafblind cohort too.
Layout
Learning from the difficulties of our previous suite within an older building on campus, we knew we wanted to remove any physical hazards, such as heavy cabinets and leads. We designed a space with limited exposed wiring, disguising it in trunking. Cabinets have been replaced with wall mounted screens with protective casing. These changes allow our students with visual impairment to move around and map the room freely and importantly, safely.
Testing
We next looked at the testing accessibility for our deafblind students. In a typical Audiology suite, we use a test called VRA (Visual Reinforcement Audiometry) which encourages children to turn when they hear a sound, by rewarding them visually with a toy or cartoon. In order to make this more accessible for students who are visually impaired, we have had lighting installed which allows us to light up the side of the room where the sound is. This has enabled us to offer a bigger visual reward for students who may struggle to focus on a small screen or toy.
We are also able to instantly change the colour of the lights which allows greater flexibility to find a colour that may be accessible.
Enjoyment
Lastly we looked at adding more enjoyment for our deafblind students. We have updated our toys to include bigger items, such as beanbags in a bucket, to allow VI students to participate in games. We have also added a vibro-chair to support the students to relax and settle into the room.
Result
We have found these changes have made a big difference in accessibility for some of our students. We have seen an increase in participation and managed to try different methods of testing with students which would not have been possible in our previous suite. Across our cohort we have also noticed students are a lot more relaxed coming into the room – as the design is based on a sensory room we feel there is a familiarity for students.
Written by Kate Ellor, (Senior Audiologist) Seashell Trust
What is CVI?
CVI stands for Cerebral Visual Impairment or in USA – Cortical Visual Impairment. It is the leading cause of childhood blindness and low vision.CVI is a lifelong brain-based visual impairment, caused by damage to the brain’s visual pathways or visual processing areas.
People with CVI can struggle with visual attention and visual recognition, making it difficult to understand the world around them. Some people with CVI see the world as distorted and unrecognisable. Others can focus, but might struggle to understand what they see. A crowded environment, a freezing cold day, or tiredness can have huge impact on the individuals vision.
Although there are some common traits, CVI manifests differently in everyone. Some people have trouble with facial recognition, hand-eye coordination, or combining vision with other senses. People experiences with CVI may change over time, as the condition is lifelong, they often develop unique compensatory skills to manage their visual world.
Why is CVI often misunderstood?
People commonly associate blindness and low vision with ocular (eye) impairment. But CVI is a neurological issue, where the brain has trouble processing what the eyes can see. Some people with CVI have perfectly healthy eyes, which can cause diagnostic confusion.
There is growing research that suggests many people with CVI also have overlapping conditions, such as cerebral palsy, autism, or Down Syndrome, which makes diagnosis challenging. This is because many of the behaviours presented by CVI also relate to existing diagnosis.
How can we make it easier for someone with CVI to see?
Make It Easier is a set of 3 word prompts, that can make it easier for a person with CVI to visually access the world. By using the Make it Easier method over time, we can discover the best way to support that young person with their vision.
Visual difficulty
How to Make It Easier To See
Problems seeing multiple objects
just one thing
Problems with visual search
clear the clutter
Lower visual field inattention
show it high
Right side (or left side) inattention
better on left (or right)
Problems seeing moving objects
keep it still
Variable visual attention
my vision varies
Short periods of visual attention
keep it short
Poor acuity, blurred vision, problems with contrast
big bold bright
Delay in switching on or using vision
give me time
At Seashell, we take time to understand the complexity of each young persons diagnosis, and use this as a foundation for their learning – this person centred approach enables us to support each student in the best way possible, helping them to achieve their educational outcomes.
We deliver this support both at Seashell, in our school and college, and also externally to the community. Find out more about how we can deliver support externally here.
Written by Veena Ramrakhiani. Qualified Teacher of Multi-Sensory Impairments/ Deafblindness; Seashell Sensory Support Team
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