My Brother John

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Nationally renowned activist against domestic and sexual violence speaks in … http://t.co/FHmKashs

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WISE education summit http://t.co/6PoDpERi

To celebrate their 1000th implant Manchester’s Cochlear™ Implant Programme organised a fantastic celebration at Old Trafford. It was great to be part of 1000th cochlear implant celebration event, which was really well attended by cochlear implant users, parents and carers. Held at Old Trafford, Manchester United’s football ground, entertainment was still the theme
even without a ball being kicked!

A host of activities was provided by all the cochlear implant manufacturers, from circus workshops and miniature bike riding, to massage and nail painting. Both my son and daughter took the opportunity to develop their skills as jugglers, balloon blowers and poppers, pop corn eaters and stand helpers. The children took great delight in handing out the prizes where 100 lucky winners won a copy of the children’s book My Brother John, written by Joanne Zellweger and superbly illustrated by Andy Elliott.

Over a fabulous buffet, there was an opportunity for current users to catch up and for parents to discuss their children’s progress informally with other parents including bilateral cochlear implant users. I think it’s always useful for the younger children to mix with their peers, as children with implants in mainstream schools often don’t see other implanted children.
Personally, it was also great for me to catch up with many of the professionals who have been involved in my son’s rehabilitation – from Speech and Language Therapists to the Audiologists, everyone has had a part to play. 2008

All in all Professor Ramsden’s Manchester implant team definitely scored highly again – even at Old Trafford.

If you know more about microephaly please help.

http://www.ndcs.org.uk//applications/discussion/view.rm?post_id=22562&utm_source=parent+place+ndcs&utm_medium=twitter&utm_campaign=Parent+Place+-+NDCS

How do you stop the cochlear implant falling off when skiing or snowboarding. Let’s assume you will be wearing a helmet for skull protection!

• Try using clips
• Toupee tape may work but in some cases it could irriate the CI scar 
• Use huggies - they fix the onto the processor and wrap around the ear - Advanced Bionics now make ‘Snuggies’ which are a perfect fit for the processor. It has two (pos three but forgotten now) bits that go around the processor, one which is really small and goes around the hook, so it means the huggie fits well to the ear, much better than the huggies that are made for hearing aids. The larger bands are also bigger as the huggies tear on AB processor due to the size.
• Use  an ear mould for added stability attached to some ear tubing - used in hearing aids

David and Victoria Beckham are learning sign language with their children so they can communicate with a deaf friend.

The stars and their three boys, Brooklyn, 11, eight-year old Romeo and Cruz, five, have all been receiving tuition - but Victoria admits their youngest son has been using the regular sessions to learn a number of cheeky expressions.

The singer-turned-fashion-designer tells Britain’s Hello! magazine, “We’re all learning sign language because one of our friends is deaf. So of course the first thing Cruz, who is five, wanted to learn was how to say, ‘I’ve got wind’, and the ’s’ word. He also wanted to know what other swear words were.”

Secondary school education for deaf children is a growing concern at the moment especially after finding this news on the NDCS web site.

“Government figures, published in May 2009 - by NDCS, show that deaf children’s GCSE results continue to lag behind those of all children, and may even be falling further behind.” Source: NDCS 2009. Here is a link to the article. http://www.ndcs.org.uk/professional_support/news/data_2008.html

It goes on to report that “In 2008, just 28% of deaf children achieved five GCSEs at grades A* to C (including Engish and Maths), compared to 48% of all children.” Source: NDCS 2009.

Sadly I can’t say I am surprised, given the anecdotal evidence that I hear about a secondary school where it may seem like a big effort to keep teachers back after school for deaf awareness training for just 1 pupil.

There is a fantastic campaign report to accompany the work the NDCS plan to do, but my concern is how can things be improved for today’s deaf children? I believe this has to be achieved through the support of parents and complementary support groups by making sure they get a voice in all schools and give a consistent message to local authorities and MPs.

First, understand there is no single solution to educating all deaf children. Second,cochlear implants and hearing aids are not a quick fix - if you are hearing you wrongly assume deafness can be “fixed” – it’s an all too common misconception. But yet I know it would shock most people to find out that these devices work at their best at just 1 metre away from the source sound. That’s not to say they do not work at all – far from it - they do and there can be some fantastic outcomes. However, just as the users and their parents need to be taught about how to get the most of out of the technology, so too must teachers in mainstream schools learn how to get the most out of their deaf students.

Access to lip patterns, sign interpreter/support, consistent speed of speech delivery, eye and face contact, good lighting and room acoustics all just seem like common sense to me. With My Brother John book project, there is a lip reading resource that goes well on deaf awareness sessions – I’d be happy to share this resource with readers - just go to contact us.

I believe that the majority of teachers would be willing to help more if they knew more about the issues facing deaf children in school. But let’s also inform for the new teachers by putting more emphasis on deaf awareness training for the newly qualified teachers (NQTs) – it should be in the curriculum for every teacher training course. If teaching staff remain uninformed, will the message ever get through?

And so why would, say 7, teachers stay back after school to receive deaf awareness training just for 1 pupil. Well I keep hearing “Every child matters …”

One of Derbyshire’s Brownie groups took part in deaf awareness activities last Monday as part of their weekly meeting. Author of the book My Brother John, Joanne Zellweger met with 20 Brownies who were given a talk about deaf awareness, took part in a deaf awareness quiz, were giving a lip reading exercise and listened to a reading of the book My Brother John.

Joanne was delighted with the response, “The children were really positive and it was great to see that they participated so well in this interactive event.”

My Brother John resources, prepared by Joanne Zellweger and Cochlear UK Advocate, Gerard Featherstone are illustrated by Andy Elliott and are available on request for schools and groups like Brownies too. The resources also include My Brother John colouring-in sheets for copying which use characters and images from the book There’s also a useful web links sheet so teachers and group leaders can add to their interactive presentation by showing what a cochlear implant is and what hearing loss sounds are like to deaf children.

The resources have already been taken up by several schools in Nottinghamshire and there have also been enquiries from audiology departments too.

I recently attended a Warren Estabrooks conference at St George’s Hospital in London about the use of auditory verbal therapy (AVT) , a “brand” of speech and langauge therapy for deaf children . AVT aims to help deaf children speak. To the outsider speech and language is a given- if you don’t have a deaf child you may not really appreciate the complexity of this issue - if you  work in this area or study it you have to learn it and be open to changes and advances in technology.

The case studies presented showed outcomes that anyone would have to admit can be staggering and inspiring. Children in the Estabrooks programme were given weekly speech and language therapy for  5 years! I don’t think there are many places in the UK that could even offer one session! AVT is not for everyone , around 4 out of 10 deaf children have additional needs, but I was pleased to hear that the professor also was of the opinion that everyone should be “allowed a kick at the can”. That said, in the UK for those who want to receive AV speech and language therapy you are pretty much in a postcode lottery as to whether you can find a person who is trained in AVT. You will have a battle with educational authorities because it delivered to the family and “family centred” is not the educator’s concern so that means you would have to have very deep pockets to afford this. To replicate the 5 years Eastabrook programme costs would run into many thousands. I think that’s why it may have been seen as for the elite but it should not be seen like this - it should be a choice offered to all.

On a more positve note there are places that offer parents and professionals correspondence courses such as the John Tracy Clinic see http://www.mybrotherjohn.co.uk/jtc.aspx . It is run and formulated by the John Tracy Clinic, this is a really useful course for parents who are learning to communicate with their deaf child. It’s full of encouragement and support.

The lecture was without question inspirational to see the the powerful case studies that were presented was worth the trip as it really helps to see outcomes. But just as all outcomes are not equal neither is the treatment and packages of care available for those with children who have a hearing loss. Parents not only have to deal with the pain of diagnosis - they also fight for consitent care but they have to fight for therapies that if provided would provide greater coutcomes. For example, the recent NICE guidance agrees that health providers should deliver bilateral hearing to deaf children - the lack of stipulation of packages of care to include large amounts of complementary speech and language therapy seems at best bad planning. Purchasers of health care seem to be oblivious to the success that can be acheived by combining best practice. Health providers appear  “slow” at reacting to parents demands for more speech and langauge therapy and sadl parents have to have some drive to ensure they fight for what they want for their deaf child. The education providers have to ensure that training takes place to keep all their teachers of the deaf abreast of the advances in technology and to raise their expectations.

I also think that Estabrooks brand of AV therapy is evolving - his leadership and charasmatic approach is infectious  and it shows that all AV therapy is not the same. However this evolution is not taking place fast enough  for parents of deaf children who are being told you can’t always get what you want.