Cochlear Implanted Children’s Support Group (CICS GROUP) is a finalist in the Community Support category. Here, group co-ordinator Tricia Kemp tells us how the support they provide has changed during the coronavirus outbreak, what makes her proud of their work and why Deaf Awareness Week is so important.
Tell us a bit more about CICS
CICS is an entirely voluntary group run by parents offering contact, information, support and events for families whose children are too deaf to derive sufficient benefit from conventional hearing aids and need surgical intervention to give them cochlear implants. This is a device that can provide them with access to sound, and with the right support will enable most children to develop listening skills and intelligible speech. Whilst children with additional difficulties may not achieve spoken language, they can still derive great benefit and comfort by being able to be part of the world of sound.
We welcome anyone who is a parent/carer of a deaf child before, during or after their child’s cochlear implantation. Making contact and networking helps to empower families and their deaf children to derive the best possible benefit from cochlear implantation.
Membership is free to families who have a deaf child and all events are subsidised. The group is independent and relies entirely on donations, grants, and fundraising efforts to cover expenses.
How has the support you offer changed since the coronavirus outbreak?
Sadly, all of our planned events have had to be cancelled during the pandemic. Fortunately, we have a very active invitation-only Facebook group for our members which has not only kept families in touch with one another, but has also enabled us to keep them informed on new developments in the field of cochlear implants and issues relating to deafness. Our regional co-ordinators have stepped up their email and telephone contact with members and have helped with a range of issues such as completion of benefit application forms, suggesting online resources and arranging direct contact between new and existing members using specific criteria, such as cause of deafness.
For those members who are not Facebook users, important information can still be sent via the charity’s email distribution list.
We have received an increased number of emails via our website from families seeking membership or help with a specific problem and all of these have received personal responses.
Some members have had their child’s cochlear implantation surgery cancelled due to the pandemic. This is a very stressful and upsetting experience for families who have been desperately looking forward to this, even more so as no revision dates have yet been given. Such families have been put in direct contact with others whose children have been implanted at an older age and can provide them with reassurance from their personal experience that the procedure will still be effective at a slightly older age.
Are there any other blogs or organisations that you would recommend?
Many of our members are also members of the National Deaf Children’s Society, a large national charity which is an excellent source of valuable information for parents of deaf children no matter what level or type of deafness they have or how they communicate. CICS is the only national charity dedicated solely to helping families whose children need cochlear implants, and as such, complements the work of the NDCS.
We also recommend that families with deaf children under the age of 5 years contact The Elizabeth Foundation which helps young deaf children learn to listen and talk by providing nursery services at their centre and online support through their Let’s Listen and Talk programme.
CICS would recommend the Special Needs Jungle blog which offers excellent advice for parents of children with special needs but has particular relevance for our families as much of its material is put together by the father of two implanted children.
Other recommendations are made individually to suit particular families, for example we would recommend Usher Kids UK for families whose children are deaf and visually impaired, and for those focusing very much on listening skills we would recommend Auditory Verbal UK.
We recognise that children are individuals and that there is no one approach that suits all children. Parents need accurate and independent information to help them make appropriate decisions for their children. We therefore encourage families to gather information and engage with support groups and families with relevant experience to help them consider the options and choices they make for their children.
Why do you think Deaf Awareness Week is important?
Deafness is often referred to as the hidden disability. Without first-hand experience of it, people assume that if they simply talk louder a deaf person will hear and understand them. This is far from the truth, and the impact of deafness on an adult or child and their family can be devastating. Delay in developing comprehension will result not only in delayed language acquisition but also has implications for education and school placement. Deafness can lead to isolation and depression for deaf people of all ages, and indeed their families. Today’s technology can provide a great deal of help but it is not a ‘cure’ for deafness.
Deaf Awareness Week is important because it raises awareness of the impact of deafness but also promotes positive aspects such as the latest technology, and the importance of social inclusion. It is also an opportunity to highlight the wide range of organisations available to support deaf people, their families and friends.
What are you most proud of about your organisation?
We are proud of:
- Developing from a tiny organisation in 1993 (and registered as a charity in 2003) to having a membership of over 1,600 families in our database, mainly in the United Kingdom but also a few overseas.
- Remaining an entirely independent and voluntary group, run by parents of deaf children. Consequently we are able to offer new families first-hand experience of bringing up profoundly deaf children and the difference cochlear implantation can make to their lives.
- Continuing to provide free membership for families who have a deaf child.
- Offering a family sponsorship scheme to help low income and disadvantaged families attend our activity weekends.
- The lasting friendships we have seen develop at our events over the years between families from all over the country; not only between parents, but also between deaf children and hearing siblings. In particular, the internet enables deaf children who may be the only deaf child in their class, or even school, to continue friendships that have begun at our events which helps them to feel less isolated in their community.
What advice would you give to parents/carers who feel they don’t know how best to support their deaf child?
Join the CICS Group and talk to our families for some first-hand experience. We have children who were born deaf, some with identified syndromes, or deafened, some with additional difficulties, users of every type of cochlear implant device available in the UK, are using a variety of communication modes and attending a wide range of educational provisions. Consequently our parents have a wealth of experience that they are happy to share with others. With our large membership we are able to match families with others by similar experiences and situations.
In any situation you cannot beat first-hand experience – and that is what CICS offers.
What are you most looking forward to at this year’s BAPS Awards?
We’re hoping to raise awareness of our charity and are looking forward to meeting representatives of other organisations, contact with whom we hope could be mutually beneficial.
We are also looking forward to a night of fun to celebrate the often unrecognised work of so many ‘bloody awesome parents’ – especially after what has been a trying and stressful time for everyone.
The Baps Awards Ceremony takes place 4th November from 6.00pm. This year we are at a stunning new venue – The Athena in Leicester. We’d love for you to join us for a fun night of celebration – book your tickets here.
The BAPS Awards
The BAPs (Bloody Awesome Parents) Awards allows SEND bloggers to be recognised for their talents, tales and achievements. Founded by Bringing Us Together and My Family, Our Needs, these awards celebrate SEND Bloggers everywhere. Click here to find out more…