Why is sign language so important to our little family?

It is around about a year ago now that we started using British Sign Language to communicate with Ivy. We started very slowly, with a few simple, key signs, teaching ourselves, and then, as it became clear that Ivy is profoundly deaf, picked up the pace a lot, with a sense of urgency. Thanks to our friends and family, the crowdfunding campaign earlier this year enabled us to study intensely with Deaf tutors and get to a level where we feel somewhat confident. We can hold conversations with Deaf people we meet at the museum over a cup of coffee, read aloud children’s picture books to Ivy, chat at the dinner table, where we have a BSL-only rule, and plan our days and talk about what we’ve been doing with Ivy. We are by no means fluent. Not even close. BSL teaching and learning is closely regulated in the UK, in line with the national qualification standards. To give you an idea of how far we have to go, level 6 is the highest level. The level 6 qualification puts you at ‘complex’ language use level, a C1 or ‘effective operational proficiency’ on the Common European Framework of Reference for Languages, or the equivalent of an honours degree in modern languages. We have done level 2. There is a long way to go before we can have complex conversations with our daughter. Conversations like ‘why there are so many leaves on the ground in Autumn, and why are they all different colours?’ or ‘what is that light shining outside the window at night? (the moon)’. Conversations we wish we could have now. 

Why all this bother, then? For us, and for our friends and family? Why are we encouraging the people we care about to learn BSL or Auslan? Ivy has a cochlear implant. She can hear some sounds. She is starting to copy some speech sounds, and say some words in their correct context. Surely she will be oral, and we all won’t *need* to use sign language with her? 

Ivy is Deaf. With the implant off, she is Deaf. With the implant on, she is Deaf. This is, and will always be, an important part of her identity. It gives her great gifts and great challenges, and means we all have to work a little bit harder to support her. Sign language is the only fully accessible, natural language for people who are Deaf. It enables Ivy to be 100% herself, to use her face, her body, her arms, her lips, her eyes and her hands to express what she thinks, feels, wants, or needs. We want our child to be able to be 100% herself for as much of the time as possible. We want her to be a part of her community. 

Children need language to develop. Their brains need language to grow, to make neural connections, to learn. This is the most important time for brain development and language facilitates this. We do not want to hinder her brain development. 

She tells us she is sad when we say we don’t have any raisins in our bag for her to snack on. She tells us when she sees someone jogging in the park who looks like someone we know. She knows the colours pink, purple, silver, grey, green, blue, red, yellow, white, black, and orange. She can tell us which animal she wants to go and see next at the zoo. She has thoughts and opinions and feelings and needs and we want to know what they are. We want other people to know what they are as well.

We want her to be able to choose the language that she feels comfortable using when she is older. It might be a different language with different people, but it should be her choice. 

Bilingualism is brilliant. It is good for brains. It is good for literacy development, which is often a problem for deaf children.

She might not develop a great command of English - speaking, listening, reading, or writing. She does, however, have a great brain, a great personality, a kind heart, and a great sense of humour. All of this is shared through language. We want her to be able to share all of this. 

Technology fails. Medicine fails. And a cochlear implant is not worn constantly. Sometimes she wants it off, if she’s tired or fed up. She might not want it at all, when she is older. At some point that will not be our decision any more. It can’t be worn in water. Heavy rainfall, bath time, swimming, splashing in the shallows at the beach. We all need to be able to communicate in those situations. Batteries run out, implants get broken, they fall off when hats or helmets are on. They are also very hard to use in noisy situations - busy restaurants, train stations, out on the street, in indoor play centres. Ivy needs to communicate in those settings as well. 

BSL is Ivy’s natural language. She signs in her sleep; she doesn’t talk. She makes up signs to be funny. She is getting the hang of some grammar points that are foreign and hard for us. She watches adults and children signing with a focus that we don’t see in any other context. She connects naturally with people who sign with her - no matter how basic or fluent their sign language is.

BSL is a gift to our family. It is a rich and fascinating language. Learning it challenges us every day. We are terrified we will not get good enough, fast enough. We will always make mistakes. Ivy will not. We hope we can teach her to be tolerant and accepting of our mistakes and mishaps and ramblings and mis-signs, and to correct and teach us as we go. And we are grateful for the people who are living this challenge with us, who have been doing it from the beginning, or who have stepped in recently, or who are about to step in now. It’s not too late! 

Landed in London

Dear friends, 

It's October, and Ivy was a year and a half last week! That also means it's a year since our suspicions got the better of us and we took Ivy to the paediatrician and said "I think she’s deaf”, which to me now feels like the moment when we could start working out what we needed to do to give her a life true to her identity, her needs and her talents. 

And here we are in London. Ivy is doing really well here. She is signing, watching, communicating, playing, laughing, and now she is listening, babbling and saying some words. 

In her first language, BSL, she can tell us everything from "it's bath time" to "I want water" to "it's cloudy outside”, “the girl is sad” and "Pop is in Australia!”. She loves climbing on the fire engine in the playground, going up and down slides, looking for squirrels in our local park, declaring that things are "rubbish" and putting them in the rubbish bin, reading books on her own or with one of us, building towers and knocking them down, and pulling faces. Her current favourite sign is 'how are you?' delivered with a big smile, to anything and everything she sees, likes, and wants to engage with. Planes flying low over Queen's Park, ladies waiting for the train at the station, ducks on the canal, and her toy turtle in the bath. And me, when she sees me first thing in the morning. It's quite lovely. She picks up new signs almost instantly, and the pressure is on for our BSL learning. We are so very proud of how well she is communicating with us — like any toddler, she is shy signing with other people, and definitely won’t show off her extensive vocabulary (probably about 300 signs, maybe more) on command. But with us, she is a chatterbox!

We are still working on getting settled here. Ivy still hasn’t been to a CI clinic, we are waiting, waiting, waiting for an appointment. That is a big frustration, because she needs to have the mapping checked, now that it is clear that she is hearing speech. We have started speech and language therapy with local provision though, and are in an extremely confusing stage about how we should communicate with her - the balance between habilitation of the CI and using her natural first language. If you're interested in some of the quandaries, the comments section here is a pretty good summary if you read to the end. Having an appointment with the CI centre will help, I hope.

There are big uncertainties about whether we’ll be able to stay in London for the long term, because we just can not afford to rent a property here. We thought we would figure it out somehow, but short of praying for a miracle, there's not anything we can do. And it will be no surprise to any parents reading that the process of trying to figure out what is best for your child and what on earth you should be doing to facilitate that is a constant challenge and worry. 

We do have a nice weekly routine including a wonderful, wonderful drop-in play morning in the nursery at the bilingual school for Deaf children, a visit from a family sign language tutor/ Deaf mentor, and speech therapy. Ivy and I both love Wednesdays, when we go to the school in the morning, join the other children in the nursery, and she plays and chats with them and with the lovely staff members. She adores BSL story time and the lady who reads a story each week, with props galore. It is a beautiful thing, watching her interact with adults who use her language - she lights up. We have met some lovely local people, also with little kids, and are enjoying being so close to our friends in Birmingham and Cambridge, and the drop-in visits that occur from far-away friends who travel through London or pop by for a weekend.

I have a lot more to say, but will post this and write some more on other topics another day. It was time for a little update.

I do have a couple of links to share though, that have been important to me in recent times. 

This is from a while ago, but if you can track down the show, it's a great introduction into the London Deaf community: http://limpingchicken.com/2014/11/05/deaf-community-grayson-perry/ 

Scotland recognises BSL and sign language rights: http://limpingchicken.com/2015/09/18/bsl-bill/

AND, the highlight of our weekend was meeting this lovely person and her dad, at a BSL event at a museum. https://www.youtube.com/watch?v=655nxnpkkBw . We were fortunate enough to have lunch with them!

My welcome to your world of silence

Today in our BSL class, one of the tasks was to carry out some research in the resource room at the language centre. I pulled an anthology out of Dan's pile of BSL/ASL poetry books, and found this poem, to keep and share. It comes with a video of peace exploding.

My Welcome to Your World of Silence

the birth of true communication between a mother and her deaf child 

by Elizabeth Ward

Hush is a soft caressing word, 

Silence is a quiet word in itself, 

Peace is a warm gentle word. 

I think in words, draw comfort from them,

I rage with them, I weep with them, 

I experience joy with them, disappointment with them, 

Words are my shield, my lance, my defence and my attack, 

I make friends with them, and enemies too, 

I lend a helping hand with them or accept one, 

I rebuke with them, or suffer rebuke in return, 

Words were at my birth, they accompany my life, 

Words are waiting for my death. 

But you with your mind of pictures, colours, movements. 

Where are your words? 

Your words are in your eyes, your smile, your tears, your frown. 

Your hands reach out to try to touch my words, 

I try to touch your colours; shapes I do not recognise bar my way, 

Images move but do not speak. 

I cannot see round your corners, in your hidden places. 

But out of formless shadow comes the sign, 

As out of darkness comes the dawn, 

Light bears down on the moving forms and illuminates the shades, 

They stand out sure and firm against their background of colour. 

They move - slowly - hesitantly, 

The pattern they make is softly recognised, 

My words dance with the shadows: they are understood. 

A hush begins to grow, softly, safely.
There is a silence friendly in the air.
And Peace explodes. 

Some more changes

It's been quite a month. I'm tired. I wish it were 2016. I am writing this sitting in a plane preparing for landing in London Luton airport, my third trip to England since the beginning of February. This time I am alone! Ivy is at home with Dan for two nights while I go to a job interview tomorrow. Our first time apart, ever, but that is another story.

Our sign language retreat weekend two weeks ago was wonderful. Very intense - linguistically and emotionally, and quite a gathering of amazing people. I managed to only be a little bit envious of how much better everyone else was and remind myself that I've only been learning for about seven weeks. We met some other families with a lot in common with us, in various ways, and I learnt about multi-channel signs, practiced grammatical structures, and read story books with props and signs. I also had real dinner table conversations with deaf people, signing and muddling through while these fellow diners were so helpful and generous. Ivy had a blast - so many people signing with her, playing with her, and just generally adoring her.  What's not to like? A significant bonus to the weekend was having dear friends Nikki and James staying in the pub next door to the retreat venue, so we could have dinner with them and catch up on a road trip back to Birmingham on the Sunday afternoon.

A couple of weeks ago we also heard from Ivy's audiologist about a changed circumstance in her diagnosis. He had consulted further, sought second and third and fourth opinions from neuro-radiologists and colleagues at The malformation in Ivy's right inner ear is known as Mondini dysplasia, and she has a small partially formed cochlea. There is enough of a turn in the cochlea to make it possible to implant some electrodes in there, which means if all goes well, she will be able to hear something with a cochlear implant. Exciting news, that means an operation is on the cards after all. We are not fooled or confounded by the surgeon's claim that if the operation is successful, Ivy will 'not need to be part of the deaf community'. This is rubbish that makes my blood boil, but I am good at smiling, nodding, and not challenging the authority of the man who holds the scalpel. As the magnificent uncle Josh said to me the other day, "I'm going to keep signing until Ivy says 'Josh, you really need to stop signing now.'" Did I mention how much I love my brother? Whether or not she can speak, sign, lip read, or dance to a thumping beat, Ivy is deaf and will always be deaf, and she is already a member, albeit remote at the moment, of the deaf community. After reading Andrew Solomon's Far From The Tree when I was pregnant (although I must admit I haven't yet gotten through all of it, the chapters on schizophrenia and autism were too much for me and I put it down for a long break), the only thing I knew when I suspected Ivy might be deaf was that we, as a family, would embrace the deaf community and I would do everything in my power to help Ivy to be embraced by the deaf community, too. We have chosen to give Ivy a cochlear implant because it broadens her experience, gives her options and opportunities, and may open up another way of communicating, if she is so inclined. We will not know for a while what Ivy's preferred way(s) of communicating will be. And it may change throughout her life. Multiple times. At the moment it is smiles, faces, signs, gestures, and vocalisations, including laughing and crying. And it is my job as a mother to be able to communicate with her in the way she chooses, feels most comfortable, and can express herself most freely. If you are interested in the extremely complex emotional minefield of parenting a deaf child, implanted or not, hearing or deaf parents, oral or sign, mainstream or specialist, and the many other false or true dichotomies that exist in this minefield, Andrew Solomon's chapter is truly brilliant. Write to me and tell me what you think when you've read it. I can't even begin to write about it here. There is just so much.

I am nervous about the operation, I am worried about helping Ivy to learn to hear, about imposing on her a sensation that she doesn't know and will be a massive adjustment for her. I am worried about speech and language therapy, and I am worried about the battles we will fight to convince service providers and educators that although she has an implant, that does not by any stretch of the imagination make her hearing. I am disheartened that it begins with the surgeon and will continue for the rest of her life. But I am working on learning and becoming an advocate and speaking up and teaching others, and that will be my job. My other job will be to teach Ivy to know herself and her needs, trust herself, and advocate for herself. Just like any other little girl, but with a little more at stake perhaps. My beloved Oma died on Wednesday, at age 93. Those of you reading this who knew Oma know that she was a beautiful, funny, inspirational woman who loved very much. She passed on her strength to my mum, who passed it on to me, and it is my hope that I can instil that combination of strength, generosity and love in Ivy. Somehow through the fog of surgeries, language learning, immigration, career change, family illness, and death that has clouded life lately, I hope that is happening along the way.

Language and love - a plan without a middle

So friends, here it is -- we are moving to the UK. This has been one of the most difficult decision processes we've ever had to run, but also, in another way, one of the easiest decisions. We know we need to be in a big city, a place where Ivy can be surrounded by her language -- sign language -- where she has access to high-quality bilingual schools and early education, where she can be a part of a big Deaf community, We want Ivy to have access to many users of her language, and access to services, swim classes, soccer competitions, theatre, activity days at the science museum, and most importantly, education in her language.

Yes, of course we have considered moving back to Australia. Our beloved families and friends are there, Ivy's allies and buddies and uncles and aunties and adoring grandparents. It is tempting to go there, and surround Ivy with love. But she needs to be surrounded by language and love. Auslan is the language of the Australian Deaf community. It is very closely linked to BSL, and mutually intelligible. But if we have to choose (and we do), we choose for more users, more recognition, more interpreters, more activities for kids, more educational options to choose from, more theatre companies and deaf clubs, TV channels, resources. More families who are in a similar situation to us. It's a numbers game. Generous estimates say there are around 8000 Auslan users in Australia; BSL has 30 000 at the most conservative estimate.  In this case, quantity and quality are important. We want to be able to make choices, based on Ivy's needs and preferences aside from her deafness. Yes, she is deaf and we think she should go to a school for deaf children, at least for the early years, while her language development is consolidated, and while Dan and I are still beginner signers, but there are many other parts of Ivy's identity that are in development and we want to give her choices and to have choices ourselves. So we are going to the place where we have residency rights that will give us, and Ivy later on, the best opportunity to figure out who she will be. 

We are terribly sad to leave the Ecole - this community, our jobs, this alpine landscape, the friendships we finally feel comfortable in and that we value so much, and the future we had imagined for ourselves and Ivy here. But we are 90 kilometres, over a mountain pass, from the speech and language therapists, the playgroup for deaf children (which is only for 2-5 year olds anyway), the school for deaf children where they are trying to include more signing in the curriculum to the resistance of many parents and professionals...it's just not possible to stay much longer. The clock is ticking. Ivy desperately needs language input from fluent signers, and she needs it now. I feel the urgency so strongly, when we go outside and sign about the weather, or when we're sitting at the kitchen table eating breakfast, and especially when we're reading books - looking at the pictures, lifting the flaps, and me trying my best in broken BSL. 

Dan is job-hunting now, looking for something that begins in or soon after the summer. Our school year finishes in mid-June. Depending on what happens with the job-hunting and apartment-searching, Dan will probably move to London after that, and Ivy and I will stay up here until Christmas, if we last that long without Dan, and join him then, to preserve at least some stability. I'm not feeling so confident about the last bit at the moment though- four months without Dan around seems unthinkable. So we'll see how plans pan out in the coming months. In fact we're not too confident about any of it, except for the fact that we need to be living in London by the end of 2015. 

If you happen to be sitting there reading this, thinking "oh! I know someone who has a nice little apartment in Camden, with a dog, who is going overseas for a year as of July and is looking for a housesitter", then please, let us know! We would be so grateful for any other leads or tips, too. It is a hugely daunting task, and to be honest, we are terrified. I have written a letter for friends to forward to contacts they have in London who might be willing or able to help us find somewhere to live or work - if you know someone, please ask me for a copy. 

In the meantime, we pore over the Guardian and TES job emails every morning when we wake up, Dan spends hours and hours on applications, we study, study, study our BSL, play and laugh and crawl around with Ivy, take walks in the snow, throw pancake parties on a Sunday afternoon with our dear Ecole playgroup friends, and look forward to our next trip to the UK to spend a weekend at a BSL intensive retreat. I will be taking a stack of picture books, forcing them on anyone who comes near us and demanding story-telling!

This guy is my favourite of the week: 

Noisy old London town

I was sitting in a pub in London last Thursday, waiting to meet a deaf young woman interested in coming to work as an intern at our school, with Ivy asleep in the pram beside me. I was wondering what the other people there must think, irresponsible mother bringing sleeping baby into noisy pub, and I thought a bit more about the noise and realised that a noisy pub might be fine for the deaf person I know (being that she can't hear a thing), but the person I was meeting was not profoundly deaf, so probably needed a much better acoustic environment to hold a conversation with me. I looked up the sign for 'noisy' on my trusty little app, and could ask her when she arrived if she wanted to go somewhere else because it was so noisy in there. 'Noisy' and 'London' have the same sign, circling the dominant index finger beside the ear.
http://bslsignbank.ucl.ac.uk/dictionary/words/London-1.html

London was indeed noisy, but also visually noisy, exciting, inspiring, and hope-instilling. Ivy and I had a wonderful day together on Thursday, first visiting what I hope will be her nursery and primary school, taking a tour, meeting lots of deaf kids, deaf staff members, hearing BSL users, and generally wonderful people. For the two hours that we wandered around the school with the head teacher, Ivy was more engaged than I've ever seen her before. Waving her arms around and kicking her legs like a duck in water, watching all the kids signing, welcoming us, asking us questions: "Is the cute baby deaf?" I was so relieved to be there with her, spending time with people who understand how Ivy needs to communicate. It was a happy day.

We spent the afternoon at the Remark! offices crawling around the floor being cute and adored by all the deaf and hearing staff members (Ivy), and learning how to describe animals with my first in-person BSL lesson with Deborah, who teaches us for four of the five hours a week (me). Describing animals, as well as being part of the BSL Level 1 curriculum, is particularly useful for picture books such as "That's not my monkey", "Dear Zoo", and "The Gruffalo". Although Ivy is not so good yet at looking at the book AND at the reader. We're working on it - I have found that the best way of sitting to encourage this eye gaze thing is Ivy on the couch and me on the floor in front of it, so the book is around my eye-height. Slightly awkward but do-able. Anyway.

I really was very emotional and moved on Thursday, sharing with Ivy the first day she spent in the deaf community. We must have met about 40 deaf people in one day, after having met one, a three year old, in Switzerland in the three months since Ivy's diagnosis. It felt like a homecoming of sorts, and confirmed that the big city is where we need to be. But more about those plans later. The rest of our visit was a family weekend run by the amazingly supportive and wide-reaching charity the National Deaf Children's Society. We holed up in a hotel in the middle of nowhere with about 12 families with newly identified deaf children - the youngest children were four month old twins, one hearing one deaf, and the eldest was seven and also recently diagnosed. In between there were families who had been to hell and back with meningitis, and a couple more adorable little girls Ivy's age. It was a weekend of much information, a view down the future track of Education, Health and Care Plans, fights with local authorities and schools to get services, but mostly solidarity and support. We made some lovely new contacts, and felt that we have a place to go to with any questions, requests for support, and fights to be fought. Anyone who has ever volunteered for, worked for, donated to or otherwise supported a charity that does work like that, thank you from the bottom of my heart. You can not imagine the strength gained from sitting in a room full of people who have some understanding of your deepest, darkest fears about your child's future, even if it's not articulated, including professionals (a speech and language therapist, for example), who dished out practical tips to support communication, and most importantly, reassurance.

Back home now we are struggling a bit with colds and catching up on missed work and laundry, as you do after running away for five days, and the magnitude of decisions we need to make about what our little family's future will look like is not helping things. It is frustrating knowing what's out there in terms of support for Ivy's language development, and being stuck up here on the mountain does not feel great. I wish I could pop over to London every Wednesday morning for the drop-in session at the nursery at the school for deaf children! At least we are learning a lot and signing more and more at home every day. That is a good start. And we have lovely, supportive, generous friends and colleagues here who are learning along with us and playing, talking and engaging with Ivy in beautiful ways.

The beginning of the rest of our lives, or 'a beautiful brain'.

I created this site a month or two back when we were just starting to learn more about Ivy's deafness, and have been umming and ahing for a while now about whether to go ahead with it. For now, I will - partly to record some of my own thoughts and the process, for me now and for Ivy later, but also partly to keep friends and family up to date on what's going on in our life. So much has changed already, and there are many more changes to come.

On Thursday we had the second, and, as it turns out, final lot of tests to find out more about the causes of Ivy's deafness (or deafhood, if you like). MRI, CT scan, another brainstem audiometry, and ear microscopy. Knowing more for the sake of knowing more was part of the reason for the tests, but the main reason was to determine the way forward - thinking about cochlear implants in particular. Dan and I both had a feeling that cochlear implantation would not be possible for Ivy. A statistically unjustifiable feeling, but a feeling all the same. While Ivy was under the anesthetic, it occurred to me that depending on the results, she might one day be able to hear our voices, and that felt strange, after coming to terms with the fact that she can't hear them now. Six hours after we arrived at the hospital, Ivy's ENT specialist and audiologist came to see us and showed us the MRIs. It's a pretty powerful experience, looking at your daughter's beautiful, perfect little brain on a piece of paper in front of you. The doctor pointed out the cavities on the sides of that beautiful brain where Ivy's inner ear structures should be and explained to us how very rare it was to be born without a cochlea (initial googling by Dan in the hospital room suggests that of the one in a million children born profoundly deaf, 1:100 have no cochlea. That's 1:100 000 000 for those playing at home); and how it is even rarer to be born without cochlea and with no other developmental problems, as seems to be Ivy's case, thank goodness. So there it is: no cochlea: no implants.

We chatted a bit, heads spinning, about our doctor's colleagues around the world doing (still fairly  experimental) cutting-edge mid-brain or brainstem implants, but we are certain that's not for us. The technology and research and surgery for that stuff is where cochlear implants were 30 years ago, and we don't want to risk that perfect brain for anything. Ivy is deaf, and that does not require fixing - it requires us to adjust things, learn, change, probably fight for her, but her deafness is part of her and part of our lives now.

My feelings are very mixed, a few days on from the tests, as they were at the moment we were discussing it with the doctor. I am partly very relieved - relieved that Ivy can become who she is without electrodes and magnets and external pieces, relieved that in a way, our path is clear - BSL will be her first language - and relieved that Ivy does not have to go through more hospitals, surgery, tests, adjustments, and all the clinical things that come along with the cochlear implant package.
There is also the sadness, the fear, the insecurities, the uncertainty, the feelings of inadequacy and overwhelming-ness of the challenges that lie ahead for Ivy and for all of us. But I'm not really up to writing about all of that now. I am still not able to listen to music, and I wonder if that will return for me one day.

Now we are in the business of resetting our lives, studying sign language, playing games - word games, visual games, crawling-around-the-floor games, trekking-through-the-snow games, with our beautiful, cheerful, engaging, curious, funny, determined little girl. And developing that beautiful brain of hers to its full potential in the visual world. That is our life's work now, and what an honour it is.

.