A Good News Week

    I'm not often one for self-congratulatory posts, mostly because I want to talk about issues than purely about me; if it wasn't for my interests in dyspraxia and deaf studies, I'm not sure if I would be able to find enough to write about; then again, I'm sure I'd have other interests that would (I hope) fill the void!

    Having said all that, I wanted to share a couple of pieces of good news I've recently received. One I only got yesterday; I've passed the second portion of my BSL exam, part 102. Having already got 101 behind me, this means I've only got one more to go before I (hopefully) become qualified in level one BSL. That thought is amazing and terrifying in equal measure - and possibly the subject of a separate post.

    I hadn't realised how nervous I'd been about receiving the results until I saw Paul at work yesterday and he gave me the good news; it was as if a weight had been lifted off my shoulders! I didn't get top marks, but I got enough for a pass - and had my confidence raised through the roof at the same time. I must give kudos to my fellow student Michelle, who scored an amazing 38 out of 40 marks ... phenomenal!

    I've only got another five or so classes - and one more exam - left, and I know I'll miss it when I'm done, but I'm looking forward to the final exam; I am determined to pass, no matter what.

    I'll talk more about that in my next post, but I wanted to share the other piece of news with you; I've been offered an 18-month publishing contract with Inspired Quill Publishers. They're a new publishing house on the scene (www.inspired-quill.com) and I was fortunate to be selected for their Grand Launch in September of this year.

    As a lot of you know, I've been working hard to try and get to this point for many, many years now - so to have this opportunity is one I'm utterly thrilled about - and Sara Slack, Inspired Quill's Managing Director, is now officially one of my heroes for taking that chance on me (and she also loves sci-fi, which makes her doubly awesome in my book!).
    Inspired Quill have accepted my full-length manuscript "Fall From Grace", which is about ... well, why not check out my website and get a few details from there - www.writeordie.co.uk. I'll also keep you up-to-date on the release date as and when it's agreed.
    This is only a quick post - I have a manuscript to edit before my deadline on Friday - but will write again soon.

The Elusive "Cure"

    If you had an invisible condition - invisible, that is, to everyone except you - would you want to find a cure for that condition? If there was a pill that you could take and rid yourself of it, would you do it?

    I have invisible conditions - dyspraxia and extremely mild Asperger's - and people often don't understand why I think or act the way I do, or sometimes don't respond to situations in the "normal" way. But would I ever seek a cure to those conditions?

    No.

    For years, I struggled with that whole concept of "normality" and going through the normal teenage angst of wondering why I didn't fit into the cool groups, or at least how I could appear normal: but with the added complication of not entirely understanding what "normal" was.

    I've written before about how I felt as a teenager; how I felt like a stranger, looking in at everyone else following a set of mostly unspoken rules that I never quite understood. As I've grown older, I've learnt more about those rules - mostly through making a lot of mistakes along the way - and can now blend in for a lot of the time.

    I think that in itself can cause a problem; people see me blending in, and forget that there's a problem in the first place because I "look alright." Sometimes, I suspect that people just don't understand the extra effort it can take to project that image; the things that are natural to everyone else - body language, expressions, emotions - sometimes feel forced to me, and I have to make sure I'm concentrating hard to interpret what people are saying and expressing, and then know how best to respond. It might not seem like much, but to someone who has the condition, believe me when I say it is a big deal.

    People with dyspraxia or any form of DCD ... or Asperger's ... or an autistic-spectrum condition ... are varied in their "degree" of condition. Although I can hide my conditions pretty well most of the time, it doesn't change the fact that I'm a moderate dyspraxic - and can struggle to explain what it's like to be dyspraxic and live with the condition every day. There are occasions when I'm tempted to wear a badge declaring it to the world, but my rational brain quickly takes over!

    I guess that's one of the reasons I blog about the condition so frequently; I want to raise awareness of the condition, to try and make people more conscious of how dyspraxia can affect someone - and how they can often project an air of "normality" because that's what they've always done .. and they still just want to fit in!

    Having said all that, would I still say no to that mythical cure I spoke about at the start of this piece? You bet I would. Why? Because dyspraxia is part of my personality ; it's helped form me into the person I am - and I've grown to like who I am. I'm determined to make people more aware of the condition - and how it can affect sufferers - but I also want to encourage people with DCD-type conditions to feel proud of who they are, and their unique viewpoint on the world. Never change - never feel pressured to change - but enjoy who you are. You rock!

The Life & Times of A Talented Woman

1. Why don’t we start by you telling us about yourself? Who are you and where do you come from?
    I'm Barbara Neill and I was born in the village of Aylesford, Kent. I've spent most of my living in the Maidstone area.

2. When did you first realise you had dyspraxia?
    I discovered my dyspraxia when my son, (now 22), was diagnosed as a young child, so I've known about it for the past seventeen years or so. I had a massive 'eureka' moment as I read through the questionnaire for my son, and recognised myself.

3. Did you find school difficult? Were there any particular subjects you struggled with as a result of your dyspraxia?
    I went to Balfour Infants School in Rochester, and I loved it - but it all went steadily downhill from there. However, I did manage to pass my 11 Plus and that never fails to amaze me, as there was certainly no recognition of dyspraxia and, subsequently, no provision for schoolchildren with dyspraxia in those days.
    I went to a school that was known, at that time, as Maidstone Technical High School for Girls and there was only one subject I didn't struggle with. English was easily my favourite and I've always really enjoyed creative writing. PE was terrible and I was the archetypal 'last one to be picked' for team games. I left school at fifteen with no qualifications.

4. You’re also the mother to a dyspraxic son. How did you approach your son’s diagnosis – and also help him learn about and deal with the condition?
    When my son was diagnosed, I was fortunate enough to have a friend who also had a dyspraxic son and had ‘been through the process’ a year before. My son was only five years old when I first suspected he had dyspraxia, and it was an uphill struggle to get his school to acknowledge the fact, never mind arrange for a diagnosis. Every year when I read that he “could try harder”, particularly in PE, I had to remind his teachers that he needed to be assessed for dyspraxia.
    It was went he started secondary school that we were taken seriously enough for him to be assessed, diagnosed and offered support. However, he approaches dyspraxia very differently from me; he tends to be like a bull in a china shop and just ‘goes for it' when he wants to do something. Consequently, he’s had quite a few accidents, which can be very worrying from a parent’s point of view. I have always tended to stand back until I feel confident.

5. How did you feel when you first discovered you’d got dyspraxia?
    I was surprised to discover I had dyspraxia but continued to play it down for a number of years. That’s changed now, of course, as I work towards raising awareness of dyspraxia. Even now, I keep remembering things I’ve had problems with during my life and realising that the problems are due to dyspraxia.

6. How about now? Has your attitude changed over time?
    It certainly has. I’m aware that I’ve been held back in many ways because of dyspraxia and I’m appalled that there has been no help available for adults for such a long time. I’m quite happy to shout about it now, instead of trying to blend into the background, as I used to before I found my confidence.

7. I’d like to talk a bit about Kent Dyspraxia Association (KeDA - http://www.keda.org.uk/), which you co-founded. Could you tell me a bit about the association?
    Due to my dismay at the lack of provision for adults with dyspraxia, I jumped at the chance of setting up an organisation, for adults with dyspraxia, with Frances Beaumont, the Occupational Therapist who carried out my assessment. Frances had been thinking of setting up a “support group” for a while but really needed a ready, willing and able dyspraxic adult to share the responsibilities.
    After a very well-attended talk that Frances and I gave in Faversham, followed by a meeting in which we formed our committee, KeDA (Kent Dyspraxia Association), was established.
    We are having a series of roadshows throughout Kent, in which we aim to raise awareness of dyspraxia and, hopefully, let people who have it know that KeDA is around to offer support.

8. How do you see KeDA getting involved with awareness-raising over the new few years?
    In addition to the roadshows, Frances and I (who both have teaching qualifications) give talks and hold workshops, and will be giving talks at the Health & Social Care Expo at the Kent Showground in Detling on 16th June. I will also be delivering a session on Dyspraxia Awareness at a ‘Learning at Work’ day at a local branch of the Inland Revenue.
    I have developed a checklist of some of the most common difficulties associated with dyspraxia that I circulate whenever possible, as I feel strongly that there are likely to be many adults who have dyspraxia but are unaware of the fact.

9. As a trained hypnotherapist, do you see that skill helping people with dyspraxia?
    As a Hypnotherapist, (trained by my father, Bob Neill, who was a professional Hypnotherapist for many years), I have developed a number of programmes specifically for people who have dyspraxia. I’m aware that various strategies can be used to help with some of the difficulties that people with dyspraxia experience. In my experience, the reality is that it can be yet another thing to learn that takes even more effort. If someone with dyspraxia wanted to learn to drive but needed the confidence to do so, a session of Hypnotherapy with a therapist who has a thorough understanding of dyspraxia and how it can relate to driving, should be enough to give them the confidence they need. I passed my driving test over thirty years ago and have never had any points, (or endorsements), on my driving licence!
    Hypnotherapy can help with just about anything, including anxiety when eating in company, (fear of making a mess etc), walking in a way that reduces the risk of stumbling or falling, and many other difficulties faced by people with dyspraxia on a daily basis. There is more information on my website: www.bneill-hypnotherapy.com

10. Finally, what advice would you give to someone who’s heard of this label of dyspraxia for the first time?
    My first piece of advice to anyone who is personally affected would be “Don’t Panic”. It’s not all doom and gloom and there are, believe it or not, a number of positive aspects of dyspraxia. For instance, people with dyspraxia tend to have average to above average intelligence, (Einstein was dyspraxic) and we tend to be creative and artistic, compassionate and determined; traits to be proud of, in my view.
    I would, of course, highly recommend Hypnotherapy, as it really can make a huge difference and is also a very enjoyable experience that requires no effort.
    I would also suggest linking up with other people who have dyspraxia. If you live in Kent, contact KeDA (www.keda.org.uk). There are quite a few websites about dyspraxia and I have listed some on the links page of my website. I can also highly recommend a facebook group; DYSFunctioning, which has a very supportive group of people who are only too happy to help each other.
    The Dyspraxia Foundation serves the needs of children with dyspraxia and their parents and it is hoped that, in the future, they will also serve the needs of adults with dyspraxia.
    I can’t emphasise enough the need to be as positive as you can. In my experience, dyspraxia causes difficulties; not impossibilities!   

Signing With Confidence

    Anyone learning a new language will know that, during the early months especially, your confidence will rise and fall according to which day of the week it is - and possible, whether it's morning or afternoon and how awake you feel.

    That's certainly how I feel; my confidence really does vary every day. I always feel energised after my classes, which reminds me how passionate I am about BSL, but because I don't get nearly enough practice for my liking, my confidence has been known to take a battering from time to time.

    I don't think that BSL users realise how much their conversations with me help reverse that fall in confidence. Their willingness to talk to me, and their willingness to tutor me on signs I don't know, means I feel I can approach them without hesitation.

    This last week or so, I've been having a "lack of confidence" moment. I wish I could pin it down to any particular cause, except to say that I've not had much practice this week and was really feeling it. Over the weekend, I'd done some revision, but also been trying to research some volunteering opportunities within the Deaf community; sadly, not many exist for Level One students, or at least not many in my local area.

    Something then happened today that really raised my confidence ten-fold - I had a conversation with a Deaf person whose first language was BSL. Now, from her point of view, it was just a normal conversation that lasted no more than five minutes, but to me it was so much more than that - and I wish I'd told her!

    For the first time, truth be told, it felt like I'd slipped into BSL and it felt natural. As we signed, I found myself almost - tantalisingly almost - thinking in BSL rather than English, and that was phenomenal. It caught me completely off-guard - and immediately my confidence was through the roof. I also managed to use humour during our conversation, and that can be a difficult enough topic in my native language, let alone a new one!

    All that from a brief conversation the signer wouldn't have thought about after she left! I really do wish I'd told her!

    So, to all BSL signers out there who take the time and patience with me to help me improve, I say "thank you" for your willingness to help a Level One signer improve his confidence - whether you're aware you're doing it or not!

Deaf Education

    Having a hearing person talk about Deaf education seems to be a contradiction in terms, but it’s a subject that interests me as an “outsider” and so I hope you’ll forgive me taking an interest in it.

    I was surprised to learn that there are no Deaf schools in Wales and only two in Scotland – and England doesn’t fare better, with less than schools remaining. Talking to Paul, my teacher, he told us how Deaf schools were rapidly closing down and how specialist Deaf education was slowly disappearing.

    The nine remaining English Deaf schools that he knew of were;

• The Royal School for the Deaf, Derby (BSL & English)
• Royal School for Deaf Children, Margate (BSL, SSE, English & Oral)
• Frank Barnes School for Deaf Children, Camden (BSL & English)
• Oak Lodge School, Wandsworth (BSL, SSE & English)
• Hamilton Lodge, Brighton (BSL & English)
• The Royal School for the Deaf, Manchester (Person-Centred)
• Royal Academy for Deaf Education, Exeter (BSL & English)
• St John’s School for the Deaf, Leeds (Oral)
• Berkshire - Mary Hare (Oral)

    Having spent a very instructive few hours looking through their websites, it’s interesting picking up their common – and different – values. Obviously, all of them are committed to giving Deaf children the best start possible, but their approaches can different. As you can see from the above list, although many deal with their students in BSL, a variant such as SSE or a combination of sign and English is often used. Two, however, deal almost exclusively with oral-based education.

    From what I’ve learnt so far (and I’m still fairly new to Deaf culture), some people in the Deaf Community see this as quite a controversial approach; sign language forms a big part of their culture, and to see Deaf children missing out on that cultural experience causes a lot of anger in certain quarters.

    We asked whether Deaf children might fare better in mainstream schools, and Paul told us about the hesitation even with that amongst some Deaf people; they see, often through personal experience, the isolation that Deaf children can experience if they’re the only Deaf person in a room – or a school – full of hearing people.

    I think it can often depend on the support that Deaf children would get from the mainstream school as well; some schools have excellent SEN facilities that can really make sure all children are integrated and confident, but this is comparatively hit and miss. It can really depend on the area that families live in, and I fail to see how such an approach can improve the quality of educational care to children at all. To rely on a “postcode lottery” doesn’t seem like a fair system, regardless of your level of hearing.

    As I said to a (hearing) friend recently who’s learning BSL with me, I don’t know if I feel qualified to speak intelligently about this debate. I'm not Deaf, merely fascinated by the language and the culture. I remember what it was to feel isolated at school, but for different reasons – my dyspraxia, in its own way, marked me out as different. Would I have been happier going to a school that focused entirely on dyspraxic students? Probably not – although being the only dyspraxic student in the school, I know I would have benefited from meeting people who had the same condition (and felt the same way) as me.

    With the Deaf community, there’s a very proud culture that can come with knowing the language – and to be educated entirely orally, either in mainstream or specialist schooling, would potentially remove, or at the very least alter, a big part of that culture.

    Is there an easy answer? Given that this question has been debated by people who are far more expert in the subject than me, I suspect not. I’ve encountered opinions from both sides of the debate; some people are comfortable with the idea of Deaf education in mainstream schools, as long as there’s a solid SEN presence, but others are passionate about specialist Deaf education, and see the decline in specialist Deaf schools as representing a decline in BSL knowledge.

    I’m floating this question because I’m interested in understanding the subject better. I know that there are a lot of people who feel very passionate about this and I hope people can give me their thoughts.

Your Opinions on My Column ...

    I'm submitting this to be my next Hearing Times column in a few days, but welcome your thoughts on it before I submit ...

    I’ve had a couple of interesting “Deaf” experiences that I wanted to share with you today, in an art gallery and the Science Museum respectively – and it’s not often you’ll hear those two in the same sentence!

    The gallery is a brand spanking new site in Newtown, near to where I work, so decided to pop down on its opening day to see what all the fuss was about. I went with a fellow BSL learner, so we used the walk down to practice some signing.

    As it turned out, there was a queue to get it, so we continued signing. Both of us are working hard to focus on signs rather than vocalising, but it didn’t occur to us that people would actually think we were deaf until a member of staff, who was going down explaining the entrance procedure, looking mildly panicked when she saw us signing and gave our tickets without trying to engage us in any conversation!

    As we went round the gallery – and continued signing – we came across similar reactions from a couple of other staff as well, and this really surprised me. Some were more eager than others to engage, but some ... well, their lack of willingness to even try was breathtaking.

    My friend and I were left shocked by this attitude, and made us appreciate, if only for that brief moment, the lack of awareness Deaf people must experience; I’ve not gone back to the gallery since, but sorely want to tell them of my brief – and unintentional – experience. I’d be interested to know what readers of Hearing Times think?

    The Science Museum, on the other hand, was a genuine surprise.  I’d gone up there with a group of friends and quickly saw the differences; the video displays had BSL interpreters on the screens, the signage was concise and to the point, and all the staff seemed far more approachable; even if they didn’t sign, the “friendliness factor” was still very noticeable – and after I spoke to a member of staff, found out that they do have interpreters onsite and have regular tours with BSL-trained staff. Awesome!

    For there to be such differences between two large organisations was quite surprising; naively, I hadn’t given it much thought, but had hoped that there’d be a degree of accessibility to everyone – and while an art gallery is a very visual experience, interaction between staff and visitors is essential, as proved by the Science Museum. I urge everyone to support it whenever they can, as it would be well deserved – and maybe we need to start nagging places to become more Deaf Aware!

Deafness, Batteries and a Cochlear Implant

    I had the good fortune to interview the amazing Lissa Waring yesterday. She very generously allows me a regular guest slot on her blog every Sunday (find it - and her own posts - here; http://ajourneywithacochlearimplant.wordpress.com/) and she writes often about her own life experiences.

    Lissa hails from Manchester in the United Kingdom, is 21 years old and is deaf. She also has a Cochlear Implant (CI) and has grown up in both hearing and Deaf circles, so it was high time I interviewed her and got Lissa's thoughts on deafness, CI's and life in general!

Lissa, tell me a bit about yourself. Where were you born – and when? What’s your family makeup?

    I was born at a Manchester Hospital in March 1990. I was born at 28.5 weeks gestation along with my two sisters.

    I was born into a family of six (including myself); Mum, Dad, my brother who is 2 ½ years older than me and my sisters Jennifer and Emily. Dad died at the aged of 39 (approximately 6 years ago) and Emily died at 5 months old.

Did you go to a deaf or hearing school, and what was it like?

    I went to a school for the deaf from 3 to 11. I guess my SEN (Special Educational Needs) showed; I wouldn't have coped in a mainstream school at the time. I LOVED going to primary school and never really faked sickness while I was there. It was very well-met to my needs. Although I had a higher reading and understanding level than the rest of pupils they still managed to cater for me.

    For my secondary years I went to a mainstream school with a Hearing Impaired Unit, which I barely went to, only for FM checks, homework club and extra support.  

What do you do for a living?

     I work at a Children's Day Nursery with children aged from 0-5 years old. I look after them, plan activities, and make sure they are kept busy!

Were you born deaf, or did you become deaf later in life?

     This is the question that is really bothering me at the mo (it was already on my mind before you asked me this question). Most people think I became deaf after birth; I was in the Neo-Natal Intensive Care Unit and Special Care for 13 weeks, and was given strong medications to battle whatever illnesses and infection I had. So I could have become deaf over three months, or instantly. I do not know.

What about your family? Is there anyone else in your that’s deaf?

    Not really. There is a cousin who is mildly deaf from repeated ear infections as a child but it does not affect her now.

Do you have a lot of deaf friends?

    I still have all the friends I grew up with! They are all deaf -  and I've made some additional friends through blogging!!

Can any of your family sign?

    Mum and Jennifer (my sister) can do the alphabet and basic signs - most useful when half asleep in the morning and they're trying to tell me something!

I'm assuming, then, you’re bilingual – BSL and English? Do you have a preference – and what situations do you find yourself using each in, both now and growing up?

     I am sort of bilingual. I’m not as fluent in BSL as you would think. I have grown up using Spoken English - this is my main language. I will use BSL/SSE with deaf friends.

So, you have a Cochlear Implant (CI). Is that just in one ear or both? What made you decide to have one?

     My CI is in just one ear. I was 10 when I was implanted. While I understood some of the details, I couldn't understand all of it. What 10 year old can understand they're having major surgery? All I cared about was that when I went for my CT scan, while walking to the ENT department I saw gravestones (maybe memorials) outside and was convinced I'd die in surgery ... so I wasn't really focusing on what the operation would do for me. My parents told me about it and I'd seen friends at school with it and I just liked the look of it so I wanted one. Plus I knew I'd hear better.

How did having a CI impact on your school life?

    It didn't really impact on my school life. I used Communication Support Workers for lessons, so I didn't have to lipread the teacher. I just followed the lessons in Sign.

Since leaving school, what impacts (if any) has having a CI had on your life – and career?

     Well, if I didn't have the CI, I would barely function at work. Not that long ago, I had a broken processor and I was only wearing my implant. Frustration was setting in because I could barely hear. Staff members and kids could have been talking in a foreign language for all I knew.

     Also, working with kids carries a huge responsibility - to watch them, listen out for them etc.  Luckily I kept trying my implant and it worked till I got home (turned out to be a broken coil).

    With the implant, I can carry conversations, hear the radio, talk to parents, help the kids with their problems etc.

What’s the general reaction to your CI in both the hearing and deaf worlds? Are they curious about it? Is it something that’s even mentioned much?

    It is hardly mentioned in my situation. The people I deal with, day in and out are just too used to seeing me with it, they never have asked. My deaf friends know about it since some of them have it themselves.

What one piece of advice would you give anyone planning to get a Cochlear Implant?

    Research it well and be sure you know what your expectations are - don't set them too high.

    Thank you for your time, Lissa - it's been great to talk to you about your experiences! If anyone would like to get in contact with Lissa, or follow her experiences, you can see her blogsite at http://ajourneywithacochlearimplant.wordpress.com/