My Brother John

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.

Today’s Waterstone’s event at the Trafford Centre was a landmark event for My Brother John. Not only was the event a great success- author Joanne Zellweger was asked to read and sign the book within the hour long event to a mixed audience of deaf and hearing children. Members of the Watersones team said , “This was one of the most interactive the store had had! We are delighted! ” Sign interpeter, Andy Higgins signed the book  as  the author read the book . Andy who is no stranger to book launches, as he was involved in the Harry Potter book launch, helped younger children to fingerspell their name.

The colouring compeition was judged by the My Brother John Illustrator, Andy Elliott who also personalised My Brother John bookmarks to visitors. Prizes, donated by Cochlear Europe, were awarded to 3 children - all under 8 with the winner being just 3 years old! It really is fabulous to see My Brother John being stocked by a nationnally known store.

I had to travel 5000 miles to put a name to it! I did not know that many parents with deaf children who have hearing aids and/or cochlear implant suffered with it more so than hearing children nor that there were things you could to help combat it!

Until you meet people who are walking your path, like me, you may not want to share those awkward experiences as readily with others. I did not know whether it was my inability to be a good parent or that it was just normal behaviour I’d have to get used to.

One of my big daily challenges was getting my son ready for nursery. The basic task of dressing was really difficult. In order for our son to get dressed, he would have to be on my knee, he would often shout and try run to other parts of the house and it would be a daily battle against the clock.

The next huge challenge was taking him in the car and settling him in to nursery.

He would want to run around the playground and not want to go inside. The situation was frustrating for my son and for me!

After attending the John Tracy Clinic in Los Angeles, I found it a great comfort to discover that as a parent with a deaf child that other parents with deaf children were experiencing the same problem and it had a name – transition – moving on from one demand to the next!

Understanding how to cope with transitions and learning what triggers this problem for your child can be invaluable benefit to the whole family. Here are my top four tips to help with transition problems:

Tip 1 Plan ahead to give yourself more time!

To improve routine situations, that you can’t avoid - give your child time and then give yourself time. On a morning, I left 10 minutes earlier than before and to try and get much extra time as I could. It sounds odd but it really worked instead of rushing and being pressured by time, my son had a chance to play longer and got more time for warnings. Wow what an impact! I t became easier for me and more enjoyable for both of us.

Tip 2 Set up a visual timetable & use a sticker to reward

A visual timetable of events can give your child a focus and idea of what was going to happen. This communication immediately gave my son some visual clues to allow him to come to terms with what will be happening in his day. Also it really helped to develop his ability to sequence events and speech and language. All that was needed was a set of pictures small enough to carry around to place on an A5 chart. Put your digital camera or your camera phone to good use and photograph everything your child does or uses. Develop a chart with NOW, NEXT AND THEN and put the picture in order. Laminating them will make them last longer. Ensure you have some stickers with you to give your child as a reward!

Tip 3 Use experience books

Use a scrapbook to keep pictures or photographs (or draw) of what happens during the week at the weekend and write a short narrative, this not only helps with transition but is great for developing language and speech too. From a dentist visit to a trip to the theatre if you come up against an awkward transition they are great to fall back on as they provide a sequence of events to help with your communication.

Tip 4 Be persistent & consistent

Keep trying and don’t give up! Things will take time to improve, but once they will and when they do – money can’t buy the feeling. Today, my son walks in to nursery when the whistle blows. He takes off his own coat, he hangs it up on the peg, and he chats the whole time. And as we trace out the letters of his name card, he spells out his name and tells me his name. He walks in, and through the window he gives me a wave and a final salute before I leave. Priceless!

We found this really useful to show  from the FDA Cochlear Implant Information

A really great article written by Penny Wark of the Times appeared today. It gives some insight into the issues faced by parents of a deaf child with a cochlear implant or hearing aid. Here is the link:

http://www.timesonline.co.uk/tol/life_and_style/health/article5946309.ece

Enjoy!

Wow almost forgot to mention that the Ear Foundation who has been a fantastic source of support and information for parents is also a stockist of the book too!Reading is so important for language development and we know it’s not always easy to make the effort to put the equipment back on and read a book at bedtime.http://www.earfoundation.org.uk/shop/items/96
They say on their web site as of March 21st 2009 “About a boy who is deaf and uses both a cochlear implant and a hearing aid to achieve binaual hearing. It shows the fun relationship he has with his hearing sister. Fun illustrations will make this a great educational bedtime read!”

We are delighted that Forest Books are now selling My Brother John by Joanne Zellweger- here’s link http://www.forestbooks.com/pages/Categories/Books/1906671001.html
Forest books is unique. They have a worldwide reputation for an accessible, friendly, fast and helpful service. This year they celebrate 20 years as a Deafness and Deaf Issues Shop and 14 years of their Website. As the trading subsidiary for the UK Council On Deafness our profits they reinvest back into the deaf community.