- Hi Jane, thank you for agreeing to take part, can you first start by introducing us to you and your family…. age, location, family members etc.
- Can you tell me more about the wonderful Chloe?
Chloe is unique as she was born profoundly deaf and severely sight impaired. She has a type of LCA- Leber’s Congenital Amaurosis (rod and cone dystrophy) but the faulty gene has not been identified. When she was a baby it was hard to imagine how she would thrive and be happy like other children with no hearing and very limited vision. She is a bright, funny and chatty little girl who loves learning and most of the time thinks the world is exciting and wants to play an active part in it. She is inquisitive and has responded well to all the intervention and support we have had over the years. At 14 months old she had electrodes inserted into her cochlear (the inner ear) which send electronic signals to her brain which she interprets and translates into meaningful sound. The brain is very clever and though she has to work hard processing the noise she copes remarkably well. You can see her switch on video here: https://www.youtube.com/watch?v=k3ebSN5zMjQ
The most amazing thing is that Chloe is managing in mainstream school with an awful lot of specialist support from a team of one to one Multi Sensory Support Workers, advisory teachers, speech and language therapist and a wonderful orientation and mobility worker. She is an example of how a team around the child can work. She is a Braillist and is currently getting to grips with grade two. She learning new contractions every day and her reading is taking off at the moment. I am finding it hard to keep up.
- You are a patron of Sense, the national charity that supports and campaigns for children and adults who are deafblind or have sensory impairments, can you tell me about your involvement in the charity?
Sense were the charity I turned to when we returned from the hospital after the ophthalmologist indicated our baby couldn’t see or hear. We were absolutely heartbroken, I remember sobbing in my Mum’s arms and somewhere in the back of my brain remembering there was a charity that supported deafblind people and their families. Sense have helped me over the years to fight for the right education support package for Chloe, provided a specialist advisory teacher for the multi sensory impaired, offered a local family support group and provided information and advice which I have used to ensure local deafblind children get the services they are legally entitled to. I would not describe myself not as a patron but an active Sense member.
- You and six-year-old daughter Chloe have won a Sense award for taking part in numerous fundraising and public awareness campaigns for the charity and have been named change maker of the year. Well done for this award, can you tell me what it meant to you to be recognised for all your hard work?
As a parent carer I am my child’s advocate and will do anything I can to remove the barriers she faces. I started my blog, Navigating Chloe’s World because I wanted a way to express what our life was like. It can be alienating and isolating raising a child with disabilities and I wanted to reach out to other parents and let the mainstream world know how it can be. I write it for myself but it has been so amazing to be recognised for my words and for our willingness to open our lives up. I have been leading a campaign to get services reinstated for deafblind children in Devon which is a draining and emotionally exhausting thing to do. I am a firm believer in never giving up and taking action when you need to. I cannot explain what a boost it was to me and my family to get recognised by Sense for the work I have done and continue to do. I love that I can call myself Change Maker and the fact that I share it with Chloe makes me even prouder as she inspires me every day. I will always want to celebrate her life and highlight the challenges she faces. I have been invited by Sense to attend a reception in March in the Houses of Parliament which will raise awareness of the updated deafblind guidance. It is such an honour and I will make sure I continue to live up to my title.
- If you had one piece of advice to give a parents/ carer of a newly diagnosed parent of a VI child what would it be?
Be kind to yourself, take deep breaths and accept as much help as you can whilst remembering to still enjoy your child. It is a shock and it is hard to imagine that life will be ok but you will find your way through. Visually Impaired people live full and active lives and your child will too.
- You have worked very hard to raise awareness; are there any specific story or anecdote that you can recall that really sticks in your mind about a way in which you have helped someone?
At the end of last year I started to chat on facebook via a Sense campaign group to a lady who was struggling to get her child the right support. She knew about our battle in Devon and so we spoke on the phone and I passed on all the letters that had helped us be heard. She was really worried about her child’s deafblind needs being totally disregarded in school and didn’t know where to turn. The best Christmas present I had was an amazing message saying that thanks to Sense’s legal team and my input her daughter was now getting the right support. The fact we have never met but I could help change the outcome for her daughter is an incredible feeling.
- If there is one thing you could have done differently in your approach to raising Chloe, what would it be and why?
Trust my own instincts a bit more and when I was being overwhelmed with professionals. I wish I had told some of them to go away and come back when we were ready. I feel robbed of the precious time with my new born.
- What other fundraising events do you have in line for Sense?
My friend Claire is running the London marathon for Sense this year in Chloe’s honour. She has to raise a lot of money so I have promised to help. We will be planning another fundraising evening soon, perhaps a quiz night.
- What has been your greatest challenge in life and how did you overcome it?
My greatest challenge has been to accept what life has thrown at us over the last six years. I am a totally different person, doing a very important job bringing up my beautiful girl. It is not her that makes things hard but all the challenges she faces finding her way in a sighted and hearing world. There is not a manual or development book I can turn to and so we have had to feel our way through each step she has taken. I am learning braille so I can support her learning. I have also learnt the deafblind manual alphabet and some tactile signs which we need to use if it is noisy or she hasn’t got use of her processors which can’t get wet and she takes off at night. She is having speech and language therapy at the moment as even with her implants she cannot hear or process every speech sound. The team around her including me are using a special system of tactile phonics to help her understand where sound is produced. This is vital as she cannot follow lip patterns like most deaf children. If she can’t hear the sounds produced then she cannot spell or read words correctly. It is complex but I am very lucky that we have an amazing team of professionals who are happy to help solve every puzzle that Chloe presents. Getting her the help in the first place was an almighty battle which I am prepared to do again and sure I will.
10. What is the greatest challenge Chloe has ever faced in her life too date?
Every day for Chloe is a challenge but she has not known any different. She loves to learn and uses everything she is given to help her participate in and understand the world. I watched her processors being switched on at fifteen months and rejoice in the fact she has been given the opportunity to access sound. Her brain has been able to make the connections and she needed sound to help her make sense of the world. Her spirit, sense of humour and fun fill me with pride. She knows she is different but I make sure she also knows how amazing she is. She is a long cane user, has cochlear implants and is a Braillist, my extraordinary little girl.
If you would like more information about Sense and how they help please click here to be taken to the website!
If you would like to read more about Chloe and her life with mummy Jane, please click here!
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