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.

.