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We are delighted to share that we have been able to offer a series of free workshops for parent carers of children and young adults with the most complex disabilities thanks to sponsorship from Slater and Gordon Lawyers.  

So far, sessions have included Sleep Support, Internet Safety and a workshop focussing on wellbeing and self-care.

Still to come this year is legal support from Slater and Gordon themselves, Benefits advice, Mental Capacity Act information and an Understanding Behaviour session delivered by industry specialists.

We are so grateful that Slater and Gordon Lawyers were interested in supporting Seashell’s family services. So far the partnership has reached 40 parent carers, with many more to come.

Parent carers of disabled children face significant financial inequalities. Many are unable to work due to care responsibilities and the lack of/cost of appropriate childcare, so being able to remove financial barriers and deliver this support for free is invaluable.

The most recent workshop – wellbeing and self-care – was particularly well attended and feedback has suggested that it is an area that our families would the opportunity to engage with more in the future.

An attendee of our most recent workshop on wellbeing said: “It has been incredibly helpful and so lovely to feel listened to and seen as an individual.”

Another parent carer said: “It’s the first time we have been able to attend something as a couple for a long time.”

Rosalyn, a Principal Lawyer at Slater and Gordon said: “Although I regularly meet with families of children with complex needs and disabilities there is usually an agenda and endpoint to the meeting, and so it was a privilege to be able to just listen and absorb information and stories, which I hope will give me a greater degree of empathy and understanding generally.”

Jenny, Family Support and Participation Manager at Seashell said: “The partnership with Slater and Gordon has meant that we have already been able to host some really beneficial workshops for families, as well as some exiting plans for the autumn term. The feedback we get from families attending these events just shows how vital it is that we continue to offer parents the opportunity to attend workshops that not only empower them to increase their knowledge but also to look after their own health and wellbeing.”

The workshops have been delivered both online and in person, in the hope that as many families can access the support as possible.

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.

Sensory rooms make use of various stimuli in order to engage the senses of people living with a variety of sensory conditions. These rooms aim to support people in developing their senses, fostering a new level of confidence, independence, and accessibility in their everyday lives.

Sensory rooms can benefit a massive variety of conditions, from Deafblindness to autism, with proven effectiveness for a whole selection of people. Here at Seashell, we make use of sensory rooms at our facility to support young adults with complex needs, helping them learn, relax and engage.

As part of Seashell’s campus transformation, our Audiology team were given an opportunity to design an industry-leading Audiology Clinic within the new Moulding Foundation Building.

What is an Audiology Clinic?

Using our specialist knowledge and understanding of children and young adults with the most complex needs, our fantastic team of experts were able to create a specialist Audiology Clinic that is as accessible as possible – designed with both students with hearing impairments and deafblind students in mind. But what is an Audiology Clinic, and how can it support students?

Our Audiology Clinic is designed to test students’ hearing and sight, offering them the opportunity to move freely and safely around the room. Providing both enrichment and learning opportunities, our Audiology Clinic is an undeniably valuable asset to our campus.

Our 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.

Sensory 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.

Fostering 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.

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.

Written by Kate Ellor,
(Senior Audiologist) Seashell Trust

Toileting Webinar

This webinar will focus on all things wee and poo, post potty training !

It will help you understand how the bowel works, what can go wrong and what to do about it.  An essential first step towards toilet training an older child.

The session will cover the following:

  • recognising constipation and the importance of treatment as well as working towards getting the poo in the loo!
  • understanding how the bladder works.
  • reminding you why it is essential to sort the bowels first and why it is so important to have plenty to drink.
  • how to recognise when the bladder is misbehaving and what to do about it.
  • ways to encourage your child towards the toilet.

To book your place email your details to familyservices.webinar@seashelltrust.org.uk – please include in your email the names of those wishing to book.

 

This webinar is supported by The Children’s Bladder and Bowel Charity

The Seashell Trust
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