Guest post: Navigating Christmas when your child is deaf and blind
So much of the run-up to Christmas is about sensory delight - but what if your child cannot see or hear? MN blogger Jane Ring describes how they've adapted festivities for their deafblind daughter, Chloe
Navigating Chloe's World
Posted on: Fri 19-Dec-14 11:03:24
(19 comments )
It is beginning to look a lot like Christmas in our house, which is just the way our six-year-old daughter, Chloe, likes it. The lights, decorations and two trees (one just for her) were brought down from the attic on the last day of November and our house has resembled Santa's grotto ever since.
Chloe was born deafblind, and our first Christmas together as a new family was one we got through rather than enjoyed. We were still full of shock and sadness. I had just started weaning Chloe which was particularly messy due to her inability to see the food coming towards her mouth. There were other indicators we used (putting her in a high-chair, giving her a spoon) but she was too tiny to understand. We were in London in my big sister’s laidback household (thank goodness) and my family were brilliant, but there was no hiding the sadness that sat amongst us. It was difficult to imagine a positive future for our beautiful baby girl. My eight-year-old nephew, in his innocence, voiced what I wondered every minute of every day, “If Chloe can’t hear and can’t see, how is she going to communicate?”
It was hard to know what to give our baby on her first Christmas. Luckily lots of toys for babies are automatically tactile: soft teddy bears, balls of different sizes and textures, rattles and taggies to name a few. My sister gave her a moving light and sound ball which was designed to encourage crawling and was coveted when she got a bit bigger. At the time, though, her world was very small – she reached out with her hands and explored what she could, but she didn't really have any motivation to move. Why should she roll over when lying with her back on the floor or in her vibrating bouncy chair was safe and secure?
At our first Christmas as a family, it was difficult to imagine a positive future for our beautiful baby girl. Now, she's holding her own at the Nativity.
I felt so much fear at this time. I couldn't think about her future and it broke my heart. Like most new mums, I would spend hours watching her, but all I could focus on was what she was missing in her dark and silent world. Thankfully we had people we could turn to including Sense, the charity for deafblind children and adults. We were given programmes of activities to do with Chloe which helped her make connections to the world around her, and began to reassure us she would be okay.
Now, Chloe loves this time of year - the lights and tinsel, singing Christmas songs, being with family and having presents. For her, giving presents is nearly as exciting as receiving them. I know this because she flaps her arms and twirls her feet as she hands them out, which is her way of expressing that she is thrilled. It's a trait she has had from birth and a very special part of who she is. She is a funny, determined and increasingly independent little girl who has a knack of drawing people into her world.
Since that first Christmas, her world has expanded beyond recognition. Our wonderful child is an expert communicator thanks to bilateral cochlear implants, an amazing team of specialists that we have supporting us and her enthusiasm for life. Christmas is just as full of wonder for her as any other child her age and we try to give her the same opportunities. In fact this year she is getting a bike from us <gulp, deep breath>.
Of course, there are still struggles. Whilst fairy lights and all the tacky light up toys that are around at this time of year are brilliant because they stimulate the tiny bit of vision Chloe has, other aspects of Christmas aren't so good. Crowded, noisy environments, like the school fair, are her worst nightmare and she won’t tolerate them for long. They are too difficult to navigate with her long cane and cochlear implants cannot filter out sound so noise becomes overwhelming. Recently she has started flicking off the coil that sits on her head so she doesn't have to hear. This is clever but frustrating for me or anyone supporting her as communication is instantly broken.
Last week was the much anticipated school nativity and she was magnificent as a duck. Not just any old duck either – she introduced the show. She waddled carefully in front of the stage and welcomed everyone to the play in a strong clear voice and I thought I would burst with pride. For her to be there, holding her own amongst her peers, took hours of preparation. It involved listening to the music at home (a lot), learning the signs and going through the script so she had a map of the play in her head. No one else knew that she had her radio aid on, or that her multi-sensory support worker was quietly directing her. She sang her heart out, wiggled her hips, twirled around and was truly awesome. This festive season I am so thankful for the joy our daughter brings to our lives and for the continued support and guidance we receive which enables her to cope in this sighted and hearing world and be perfectly her.
Jane's family has been supported by the charity Sense since Chloe's was diagnosed. You can find out more about their Christmas campaign, #therealtoystory, here.
By Jane Ring
Thank you for sharing your story, which really moved me. Wishing you, Chloe and the rest of your family a very Happy Christmas
What a lovely story nearly moved me to tears. Our son now 16 is deafblind following pneumococcal meningitis, sadly it has also left him with cerebral palsy and epilepsy but still enjoys Christmas and we are sure he picks up on the atmosphere.
Like Chloe he has a cochlear implant which due to the amount of ossification only gives him environmental sounds but we are sure he can hear some low music notes. He is a happy chappy and has a few "on body" signs.
Wishing you all a very happy Christmas
Happy Christmas to you. Our children have so much to teach us about the world. Im glad your son enjoys christmas it sounds like you do an incredible job.
Thank you for sharing. Happy Christmas to you and Chloe.
Merry Christmas to you and your family and thank you for sharing your story xxxx
Truly humbling, Merry Christmas to you, Chloe and your family x
Thank you for posting, as someone who has impaired hearing, I completely understand Chloe's difficulties in crowded noisy environments. Louder isn't necessarily better.
Wishing you a Happy Christmas!
How proud you must be of Chloe.
My grandparents were deaf-mute throughout their lives, both worked until retirement and raised 6 happy children. I'm proud of them too.
I hope you all enjoy a wonderful Christmas x
Chloe sounds like a real sweetheart, you must be so proud. Merry Christmas
So glad to have read about Chole. What a wonderful family you are. Have a beautiful Christmas
Happy Christmas. As mum to a deaf baby, it's great to read positive stories like this.
Another thankyou for sharing this story. Happy Christmas.
I'm now off to look into the charity Sense.
Thank you all for your lovely messages. It has been emotional remembering how far we have come. I hope our story gives other parents hope. Its not an easy journey but it is so rewarding.
It cannot be easy for any child to have to cope with such difficulties especially in a world with limited ideas regarding ideals but I would say if a child is loved, secure and supported as in this case it can only add to their quality of life.
Totally agree Eyesearheart it is a very hard journey with the overwhelming feeling are we doing it right but every thing Jay does however we are so proud. When he flaps his arm up and down he is saying "Where are you" that's me not him
As I said before have a fabulous Christmas
What a lovely post! Your dd looks gorgeous, so lovely to hear how far she's come.
Our dd was born with ds and has moderate hearing loss. A lot of what you say resonates; the initial sense of loss, the delight in Christmas sensory things (currently taking sparkly things off the tree) and the school fair - yup, a nightmare, for dd too.
Thanks for sharing your lovely DD with us mumsnetters, happy Xmas to you all x
thank you for your very powerful story what a wonderful family god bless for xmas and the future
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