Living Paintings

In May I wrote about resources that have been useful to us and I mentioned Living Paintings. Ethan and I have been helping review some of their books and topic packs before they are lent out to other borrowers, and they asked if I could write a guest blog. Here it is:

Ethan enjoying Super Transport Pack

I can’t remember when we discovered Living Paintings or who introduced us to them, but whoever it was I am very grateful! Ethan was born with retinas that hadn’t formed properly (caused by a genetic condition called Norrie’s disease that we had never heard of), the effect of this is that he has no sight in his left and limited sight in his right eye. Ethan was pretty much the first visually impaired person I knew, and as his parents we were very determined that he would not miss out on anything growing up. It has always been our goal that he never feels different in a negative way to the rest of the world, and until we were in the situation we had really taken for granted everyday things like being able to look at a book and enjoy all aspects of it. 

The first books that we borrowed from Living Paintings were picture books. Having the raised pictures and descriptions on the audio cds brought the stories to life for Ethan. As Ethan is a brailler he could choose to read the braille overlay in the books, or we could read the stories to him. We could look at the books together and enjoy them as a family. When Ethan became more fluent in braille, he could even read the stories to his younger brother!

Ethan loves facts; he asks endless questions about history, places, science, transport, languages and music amongst other things! Where we have really loved Living Paintings is with the factual topic packs that are produced. The topic packs come with raised images, coloured pictures, audio cds and a copy of the script. We have borrowed quite a few of these packs – Super Transport and the pack about space have been his favourites so far. All the packs are really well thought out and produced. They are interesting, have great sound tracks and the quality of the raised images are really good. The descriptions of the raised images are easy to follow and understand. They really bring the images to life and add a new dimension that ordinary audio cds don't have. 

Testing the space pack

What I really appreciate about the packs is that Ethan can enjoy them independently of me, I can get on with the things I need to be doing. I don't have to sit next to him explaining pictures or reading information to him. This benefits both of us, he is able to be independent in the same way his peers can and I am able to cook, help Jasper with his homework etc. Jasper enjoys the packs too as there are pictures that he can look at too as he and Ethan listen to the cds together.

Jasper also enjoying Super Transport

Ethan has started using a Braillenote this year (a very clever bit of kit) and we are able to download books for him to read in Braille, but it can't show pictures. Living Paintings gives Ethan the chance to access images and enjoy a whole variety of topics and stories.

We have found it difficult to find factual audio cds, so Living Paintings fills a massive gap for us. It enables Ethan to have his desire for knowledge filled without him needing to rely on me or his dad to read to him. 

So thank you every one at Living Paintings - I hope you all realise what a positive impact the work you do has on others!

From a very grateful mum x

There's no business like show business..

I really should blog more often - mostly because every time I decide to write one it takes me at least half an hour to log in as I always forget what my login info is! Oh well, I'm in now!

Today I thought I would blog about Theatre trips. We have taken Ethan to a number of shows, including some which have had audio description. The first time we really became aware of the amazing resource of audio description was about 3 years ago when we took Ethan to see the Railway Children at Waterloo station.

Ethan with the star of the Railway Children!

The experience was fantastic! Audio-description at a stage show involves someone describing live what is happening on stage to visually-impaired members of the audience. Ethan wore a pair of headphones attached to a small pack thing (sorry I'm not very technical and have no idea what it should be called!). During the performance whatever is happening on the stage is described, whilst also allowing the actors dialogue to be heard as well. Only a few performances are available during a run of a show, so it's worth booking ahead - the good thing about it is there is no extra cost for it and in our experience Ethan's ticket is actually usually cheaper.

The problem with taking Ethan to some shows is that they can sometimes depend on the audience being able to follow what is happening visually in order to understand the plot etc. Without audio description Ethan can become a bit lost in terms of what is going on. We would also have to try and describe what is going on to him without disturbing those sitting around us. With the audio description Ethan is able to sit back and enjoy the show, just like everyone else.

All of the shows we have seen with audio description have also included a touch tour beforehand. This is an opportunity to go on the stage, behind the scenes and sometimes meet the actors. The touch tour is usually taken by the people who also do the describing. They take you through the layout of the stage, give you the chance to hold some of the props and to talk to some of the actors. Having the chance to get up close to where the action will be taking place really adds to the understanding of what is going on, when the play starts.

Trying on props

Another play we saw recently which had audio description was The Butterfly Lion. This play is really lovely and is currently on tour around the UK - I couldn't find a link with all the dates, but it's on in Nottingham later this month  http://www.trch.co.uk/index.aspx?articleid=22929 We saw it at the Mercury Theatre in Colchester, which is a lovely theatre. Ethan was able to wander around the stage beforehand, which he loved as there was a 'hill' he could climb up and down. He also got to get up close to the Lion puppets and meet the actors in their costumes. The actors were lovely and explained what characters they were playing and what costumes they were wearing. 

During the performance Ethan had his headphones on and could follow everything that was going on. He really enjoyed the play and II was able to relax and enjoy the play too!

Some plays have excellent narrative, so it doesn't matter too much if Ethan can't see what is happening on stage. One such show is the Horrible Histories - Barmy Britain. We saw the show earlier this year at the Garrick theatre in London. The show involves two actors taking on various characters from history and explaining various 'barmy' things about Britain through dialogue and song. Ethan and Jasper loved the show and we all enjoyed singing along! Although Ethan couldn't see the costumes or facial expressions, he was still able to get immense enjoyment out of going because the script was so good and the actors were so clear in their speech. The show is funny and both boys now know what happened to all of Henry VIII's wives through the power of song! We are going to see Barmy Britain part 2 later this month, and Ethan is being given the chance to meet the cast beforehand (this is down to the power of Twitter!). Here's a link to their website http://www.barmybritain.com/part-two/

Unfortunately not all major shows have audio description performances - we were hoping to take Ethan to the new Charlie and the Chocolate Factory musical, but they don't have any AD performances at the moment - so BOO HISS! to them!

The three Rs

Today I thought I'd share some of the resources we've found helpful for Ethan to use at home. Ethan has a very enquiring, sponge like mind and he often asks me questions I don't know the answer to (mostly Geography and Science based questions!), so anything that helps him access the information he wants and further his learning is invaluable.

Reading!
 

Ethan learning about Vikings

One great resource has been Living Paintings they provide "A FREE library of Touch to See books bringing to life the visual world for blind and partially sighted people." They make raised versions of pictures that can be felt. Each book or resource pack comes with audio descriptions which direct the fingertips across the raised pictures, describing what ca be felt. The audio commentary tells the story of the image being shown and brings it to life. As well as fiction they provide factual resource packs, Ethan has particularly enjoyed these. Each pack comes in a box with a number of raised pictures relating to the particular topic, audio cds, a copy of the audio script and coloured images of the raised images. The descriptions of the pictures is always very clear and the scripts giving the information are always interesting. There has been a great selection of narrators - Timothy Spall was the most recent one we had on the Explore the Seashore pack! When you have finished with the pack you simply stick on the pre-printed label provided and pop it in the post - easy peasy!!

We have used Living Paintings since Ethan was small - using their picture books - and will continue to use it as Ethan gets older. They have a great range of resources for all ages and really are a great charity. Even if you don't need to uses their resources - go and check out their website on the link above - they are also on Twitter @LivingPaintings.

Another free resource we have been able to make use of is Clear Vision who are a UK postal lending library of mainstream children's books with added braille. The books provided have clear brailled sheets inserted in the books meaning Ethan is able to read them alongside a sighted reader. They provide books with Grade 1 and Grade 2 braille. Clear Vision would also be a god resource for a visually impaired adult wanting to read a picture book to their children. Send you six books to begin with and you can swap them 3 at a time. Again, as with Livivng Paintings, you are provided with a pre-addressed label and it is simply a case of putting the books in the envelope provided ad popping them in the post. As Ethan is now a fluent Grade 2 braille reader and is getting ready for longer books, we are starting to move away from Clear Vision and he has now joined the RNIB library. Clear Vision has been a really useful resource and we have been very grateful for the service they provide.

As we have only just joined the RNIB library, I'm not going to say much about it now and will blog about it at a later date!

A resource I'm afraid others won't have access to is Ethan's LSA at school (although hopefully people will have their own version of her!) who has been excellent at brailling up copies of Beast Quest and Mr Gum books for Ethan to read - she is brilliant!

 wRiting!

Story Writing

Ethan has the classic Perkins Brailler to do his writing on. For those of you who haven't come across one before - it's a bit like an old fashioned typewriter! It has six keys for making the various braille notations. We were given ours via the RNIB (I think!) Ethan's machine is a reconditioned second hand one that someone else no longer needed. It was donated by the previous owner, and as Ethan will be a lifelong brailler it will get a lot of use! As with everything made specifically for those with an additional need, Braillers aren't cheap (approx £600) so we were very pleased to be given one! 

The next step for Ethan will be to get a BrailleNote - these are basically Braille computers. Ethan's VI support are in the process of applying for funding for one for Ethan as he has nailed Grade 2 braille already! These machines, from what I've been told, are fantastic (and VERY expensive) they can be connected to printers, hard drives, embossers and more. I think they can even connect to laptops via bluetooth so the teacher will be able to see what Ethan is writing as some computer wizardry changes the braille into text - clever! I hope to blog about the BrailleNote in the future once Ethan has his and everyone has worked out how to use it!


aRithmetic

Ethan's school has lots of maths resources supplied by his VI team to make maths accessible. At home we have purchased a few things which were useful when Ethan began learning maths concepts (I have put links to where you can get hold of these items under the pictures)

Snap cubes

Snap cubes - good for helping with counting, adding and subtracting. Ethan doesn't need to use them anymore as his math skills are more developed, but they are now used for Jasper's maths homework!

Fraction/Percentage Tower Cubes

Fraction/Percentage Tower Cubes - useful for comparing the sizes of fractions (particularly handy as I am rubbish at explaining fractions!)

Braille Playing Cards

Braille Playing Cards - Playing cards are a great way of improving numeracy and there are loads of different games that can be played to improve number skills (just google "playing card games for numeracy"). The RNIB shop has a selection of large print and Brailled playing cards.

Times Table Challenge CD

 Times Tables CD - Maths really isn't my strongest subject (Ethan gets his maths skills from his dad!) and I am fairly poor at my times tables (I still have to use my fingers for my 9 times table). The solution to this lack of skill on my part was to get someone else to help Ethan with his times tables - in this case a CD! We opted for a double CD called Times Table Challenge. On the first CD you listen to each set of times tables, repeat and then sing along! It covers the 2 to 10 times tables. The second asks questions to see if they have been learnt.

 

On a bicyle made for two

Firstly apologies for the slackness of this blog - I am easily distracted and it's all gone a bit bike crazy in our house!


February saw the arrival of Ethan's tandem (only two months after his birthday)! After much deliberation and dawdling, we opted for a Viking Salerno Mountain tandem. They rrp for about £500, but we managed to get one for £329 from an independent Bike shop.

Viking Salerno Tandem

We chose the Viking mainly because of the frame size. The frame lower at the back and the seat height can be adjusted to suit leg length. Ethan is reasonably tall for his age so can easily reach the pedals. This bike should last us years in terms of size as it is designed so an adult can be on the back - the bike will grow with Ethan.

Ethan was very excited about the arrival of his bike and was keen to jump aboard and start "training"!

Technical details:

• Frame: Lightweight alloy tubing, tandem design frame rear disc brake mount. Fork: Cro-moly rigid.
• Frame Size :17'' front and 15'' rear. Front stand over height 30" ,rear stand over height 23". Wheel Size : Viking BX-20 alloy double wall 36 hole tandem rims with Quando alloy disc hubs with Kenda 26'' x 2.30'' tyres.
• Gear System : Shimano Acera 24 speed Shimano S.T.I. button shifters, with a Shimano Acera front & rear derailleurs. Drivetrain Specification: Pioneer 42-32-24 alloy chainset. Shimano 11-30 8 speed cassette. Brakes: Alloy V brakes with Shimano STI levers.
• Handlebar and Stem: Alloy riser handlebars, with an alloy ahead front and rear adjustable stoker stems. Saddle: Viking comfort trekking saddles with 300mm micro adjust seat posts. Additional Information : Velo dual density grips, alloy pedals toe clips and toe straps, replaceable rear drop out.
• Frame Colour: Metallic Blue. Weight: 19 kg.

Ethan zooming along with in Wales

The bike was easy to put together and is easy to adjust, depending on who is 'piloting' at the front. Our first ride out on it was locally in Essex, it was great to be able to take Ethan out on the roads safely for the first time. Ethan was a bit worried about balance to begin with, but with a bit of reassurance he was very happy on the bike. We took the bike on a bridleway and the tyres coped well with the uneven farm track. Ethan loved going fast and soon he and Neil were zooming off ahead. We will be changing the pedals to ones with straps for Ethan, as a few times his feet came of the ones that came with the bike and he found it a little tricky to get his feet back on them whilst the bike was in motion.

Over Easter we went to Wales for a week and took the tandem - the only place the tandem could go was on the roof of the car, so some nervous driving from us. Needn't have worried, thie bike carrier did it's job and the bike arrived in one piece!

We enjoyed several family rides whilst on holiday - something we've never done before. Neil and I both took turns on the front of the tandem and on another bike with Jasper attached by a Tail-Gator. I enjoyed riding the tandem, although I found hills really difficult (I think this was more to do with my fitness though!).

In the future we plan to invest in a road bike tandem for Ethan as he has plans to be in the 2024 paralympic games! Perhaps Jasper will be his pilot - watch out for the Peacock brothers representing GB in the future!

Ethan and Jasper at the top of a VERY steep hill in Wales

Education, Education, Education

When we were given Ethan's diagnosis* one of the first things we did, after a little bit of blubbing, was to look at the Cambridge University website to see what facilities they had for blind students! A slightly odd action you might think, particularly as Ethan was only about four months old at the time, but for us we have never thought of Ethan's sight problems as something that should hold him back from achieving anything he wants in life and education is an important part of this. 

So what does having a child with a visual impairment mean in terms of schooling and what help is out there? 

We received Ethan's diagnosis at Addenbrooks in Cambridge. We were very grateful to the consultant who agreed to see us, she was lovely and immediately got in touch with the VI team in Essex. A very lovely VI teacher then came to visit us at home (I realise I have used the term lovely in the last sentence as well, but really it is the best word to describe these lovely people) . She was very reassuring about Ethan's educational future and gave us lots of ideas of how to stimulate him at home. We were very clear that we wanted Ethan to attend a mainstream school as he didn't have any other additional needs and his VI teacher was able to talk us through how she assists children during their time at school. The VI team have continued to work along side Ethan ever since that first meeting, and will do until he leaves school. I had always planned to go back to work after having children, so Ethan went to a local nursery when he was about 9 months old. I remember nervously ringing the nursery to enquire about a place and to tell them about Ethan's visual impairment - they were completely unfazed by the conversation and were very happy to have Ethan there. Our VI teacher went to the nursery to do a bit of training with the staff and Ethan had a great time there. When Ethan progressed to pre-school, again the VI team went in to do some training and to show the staff how to teach Ethan pre-braille skills (a lot of egg boxes and golf balls were used!).

Ethan's pre-school was in the grounds of his primary school, which was very handy for orientation visits in the run up to him starting. The school Ethan goes to have been absolutely fantastic .http://www.st-marys-kelvedon.ik.org/  Ethan loves going to school and integrates fully in all aspects of school life. The VI team work alongside the teachers to adapt resources and supply equipment for Ethan. He has his own big cupboard of 'stuff' which has travelled with him each year and which I'm sure has caused a few "where on earth is this going to go?!" moments. I would imagine the biggest challenge is ensuring Ethan has all the braille resources he needs to keep up with everyone else. Ethan as a 1:1 LSA and some of her time is used in the preparation of resources, particularly now Ethan is becoming much more independent in the classroom. The school now has an embossing machine which means Ethan is able to read the same books as the other children. If schools are worried about covering the cost of these extra resources they needn't be, Essex County Council supply the equipment and the school receive extra funding because Ethan has a Statement of special educational needs. Even if your child doesn't have a statement, if they have some sort of visual impairment it is likely that they will be able to receive some extra help.

There have been many simple things that have been put in place to make Ethan's life at school easy. He has a talk partner for assmblies (he can choose one of his friends to describe what is happening so he doesn't miss out), furniture is kept in the same place so he can get round easily and there are all sorts of equipement that Ethan can use to carry out the same activities as the other children (ball with bell in for PE, extra large calculator, rulers etc).

Warning - this next section is full of a mother's gushy pride! We have been absolutely thrilled by Ethan's start to his educational journey. He has absolutely thrived at school, amazing both us and his teachers with how well he is doing. He has kept up with the other children, even though he is having to do his reading and writing in Braille (and do two lots of spellings - the word and it's braille contraction!) and has made a good set of friends. 

We really have had such a positive experience here in Essex, it will be interesting to see how the transition into secondary school goes - but we have a couple of years before we have to  think about that!

The Specialist Teacher team at Essex County Council have made a great DVD called Support for Visually Impaired Students in Mainstream Schools. It is a really good resource for parents and teachers as it shows how easily Visually Impaired children can be integrated into school. It also stars Ethan and me (please don't mock the terrible hairstyle I had at the time - I was growing out a shorter style and it looks a bit like I have a small moped helmet on). I'm sure if you got in touch with Essex County Council they could put you in touch with the team to get a copy. www.essex.gov.uk

*Ethan was born with a condition called Norries Disease, which meant his retinas did not develop properly causing him to have no sight in one eye and limited vision in the other.

I want to ride my bicycle

Two years ago we decided to get Ethan a new bike. Up until this point he had a small bike with stabilisers, but as his friends were beginning to get bigger bikes and discarding the stabilisers, we felt we needed to help him keep up. Other parents of visually impaired children may have had other solutions to the dilema of how to allow your child independence on a bike, keeping them safe and not making them too different from everyone else - our solution was to buy a Pashley Robin bike.  

http://www.bikerepublic.com/pashley-robin/?utm_source=Google&utm_medium=Google%2BProducts&utm_campaign=Magento 

We wanted something that was robust, looked cool and would last. The Pashley is really well made and can go over most terrains. With Ethan's limited sight we felt that a trike would give Ethan the balance he would need to be able to ride freely. We have been able to take him down farm tracks with him riding independently, whilst we are on our own bikes next to him, giving out the odd instruction. The pashley has toe clips so once Ethan's feet are in he doesn't have to worry about finding the pedals. The bike has one, low fixed gear - you should see the speed Ethan's legs go when he's pedaling! He can also reverse the bike by pedaling backwards (a feature that his younger brother Jasper is very jealous of!) We have not let Ethan ride it on the main road because of his sight, but as it goes so well on grass and rougher tracks, he has still been able to have a great time on it. 

We are now planning on buying a tandem - I'll keep you posted about how that goes!

Ramblings

Well here goes!!

After some bad news at the beginning of the year I have been reflecting a bit on who I am and what I do, and following the suggestion by a very good pal of mine I have decided to take the plunge and start a blog. "But what can she possibly have to say?" I hear you cry! Well, to be honest, I'm not entirely sure, but as with many aspects of my life I think I'll be alright making it up as I go along.

Introductions first...

What would I like you to know about me? 

I like at least two cups of coffee in the morning (milk no sugar).

I hate minced meat (all varieties, including vegetarian, it's the texture - but I am skilled in making it look like I have eaten some when it has been served up at other peoples houses).

I enjoy food, wine and the company of good friends.

I am a bit arty and recently started making pictures from buttons (they look much better than that sounds).

I love musicals and in another life I would be a professional ballet dancer (a job only stopped in this life by lack of any ballet lessons as a child - or skill).

I am a former teacher "primary or secondary?" secondary "ooh I could never do that, what subject?" Religious Education and philosophy "oh!" (this is generally where this sort of conversation ends, with the other person turning to my husband to ask him what he does and a 30 minute dialogue ensues).

I am easily distracted - I have made the two cups of coffee mentioned above, taken down a few Christmas baubles and half loaded the dishwasher since starting this.

I have been married for 13 years to a great guy called Neil (he is much cleverer than me, but I can generally solve murders on Lewis before he can), he is an ex scientist turned computery person (I don't really understand what he does) who commutes from the green green grass of Essex into London town. We have 2 sons who are 8 and 5 and generally have a pretty marvellous life.

As you will have seen from the title one of my son's is visually impaired - I try not to make this a fact that defines him or us, but for the plans I have for the future of this blog I have included it. Let me tell you about Ethan.


Ethan our first born and next in line to the Peacock throne turned 8 on New Year's eve. He is funny, clever, loves drawing, music and sweets. He can describe most of the world's flags (I'm sure there must be some sort of TV show we could exploit this talent on) and his favourite topic is geography. His top 3 bands are Kraftwerk, the Pet Shop Boys and Daftpunk (blame his father). He has an incredible memory and imagination, and although he can be a pest at times - he brings us a lot of joy. Ethan was born with his retinas not properly developed (due to a freak genetic mutation - think along the lines of Xmen), he has no sight in one eye, and peripheral vision in the other. He is able to navigate round fairly well and is learning Braille.


The fourth member of the Essex Peacock clan is Jasper. Jasper (or Jasper Lego Peacock as we have recently taken to calling him) has one main love - can you guess? Lego. He is obsessed by the stuff and disappointingly for me is now able to build all the models by himself. Jasper is a bright (I a quite biased about my boys!), funny, sometimes shy boy who also loves drawing. He is less into sweets than Ethan, preferring hula hoops. He enjoys films, books and the Kethup Boys (his name for the PSB). He is always hungry and seems to be going through his teenage years early, but again, just like Ethan he brings us a lot of joy.

So...

Not sure if I needed to introduce myself in such detail - but hey ho! So my plans for this blog are to look at some of the aspects of having a child with a visual impairment and how to help them 'fit in' to everyday life. I will be reviewing products and experiences, and hopefully they'll be stuff in here that will be of use to people! Until next time, au revoir!