I am the grandfather of an eight-year-old girl who was diagnosed with Ushers 1B when she was 4 years old.  Initially she was found to be deaf and uses hearing aids.  Genetic testing was suggested and eventually her parents met with the geneticist for the results.  They were told the diagnosis, that this explained the hearing loss and that she would likely lose her sight at some stage in the future – no other details or information were given.

 

What do you wish you’d known at the time?

 

Anything at all about what Ushers was, what the future held, was there support and in formation?

 

What support have you found useful?

 

I searched for more information and read countless articles and eventually found Deafblind Scotland.  I found the information from Ushers Kids to be the most useful.  The many academic articles are not really much use as the condition is rare and it would seem that the disease progression varies hugely in those with the same genetic fault.  All the information has just added to the uncertainty about the future and does not really provide information about what to do ‘now’.

 

Our granddaughter was part of the many children in Lothian whose deafness was late diagnosed and I set up a pressure group that became a peer support group for children and parents.  This has been very supportive and my granddaughter benefits greatly.  The resources and support generally for deaf children are quite good – we have an excellent teacher of the deaf and the school have been great.  However, she is the only deaf child in her primary school – so everyone is learning.  It is impossible to know at the moment, but she may well be the only Ushers child in her council area.

 

There are a number of people on Social Media – Facebook especially who are deafblind and whose stories and life experiences are inspirational.   Molly Watt is just great, her blog leaves you feeling that anything is possible regardless of loss of senses: https://www.facebook.com/mollywatttalks

 

Ushers is a rare condition – but social media helps reduce the feelings of isolation. 

 

The NDCS are a great source of information and advice for deafness. 

 

Your thoughts as a grandparent, and if you can comment on the parents experience?

 

As a grandparent, I have more time to look for information and I think a little more distance to try and make sense of the situation.  Her parents are experiencing a mixture of emotional distress and denial.  The deafness is obvious, and adjustments have had to be made – basic BSL is being learnt – although classes are hard to find – other than online which is hopeless for a young child.  The whole family is now quite deaf aware.

 

What is so very hard to deal with is the not knowing what the future holds.  We don’t know when and what to tell our little girl – obviously all she knows at the moment is that she is deaf.

 

We are investing a lot of time in giving her the best childhood experiences we can. She is an only child and see her more than our other two grandchildren which can cause family tensions. We try to encourage her to be independent and to persevere when things are difficult. 

 

I think that her parents can really only cope with what is in front of them – we rarely discuss the future implications of the diagnosis.  It is a lot to try and come to terms with the fact that your child has a disability – and that the full extent will be greater at some unspecified time in the future.

 

Any hints and tips you’d like to share with other deafblind people who are going through diagnosis or are starting to loose one or both of their senses?

 

With very young children I think all you can do is to work with what is happening at that moment – take as much help and support as you can from the appropriate. 

 

Avail yourselves of all the help you can get – especially the specialist teachers that all education departments have.

 

Don’t be afraid to ask questions and to speak up for you grandchild and their parents.

 

The most helpful thing I have done is to engage with Deafblind Scotland and meet many inspirational deafblind adults who are loving life.  Whilst we are all different it is encouraging to see and hear about people who have lost both senses.

 

The Usher Kids UK website is the best starting point for Ushers help and information. Usher Kids UK  There are personal stories, accurate information and helpful advice.

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