Mad about the girl

   

     

Today’s blog is really personal. It’s also not really about Visual Impairment, but about my daughter Isla who is 7. Yesterday, after years of questioning certain behaviours and moods, struggles with school and social environments, we finally spoke with a developmental paediatrician who has confirmed to us that he believes she is almost certainly on The Autistic Spectrum, and has anxiety, developmental and separation issues.

It’s now that familiar feeling of partial relief that we aren’t imaging it, that she’s not ‘trouble’, and also a great sadness. Not that she is on the ‘Spectrum’ so much (she’s actually in the majority now in our family), more that her life may well be difficult, troubled, complicated. The worst feeling ever is when your 7 year old says “I hate myself”.
I’m really hoping that this is the chance of new beginnings though- she’s to start a brand new (Junior School), and now we are ‘in the system’ we have a higher chance of getting support, advice, and provision to hopefully lead to a happier girl. 
This was her today. No hint really about the fact that she barely slept last night, she was in such a tantrum yesterday that she slammed her own hand in the bathroom door hinge. No hint that she has been having a ‘settling’ in period in her new school for 3 days, and has been the only child who was unable to say ‘goodbye’ to her Dad and have him leave the building. No hint that she has spent her time not at the school shouting, crying, swearing, being rude, defiant, juxtaposed with hugging us so tight it hurts and refusing to let us go. No hint that she screams that she “wants to be a boy”, and we had to choose the new school partially by how relaxed they would be about her wearing the ‘boys uniform’.  Notice however how she won’t look at the camera- she asked for all the photos in various poses, but was facing herself in a mirror and couldn’t drag her eyes towards me for the pictures. The above photo is the one I’ve chosen to share on Facebook, but this one is more accurate, I guess:

  
She is amazing, funny, loyal, clever, has great attention to detail, writes beautifully and has stunning language. At times it feels like she is almost an adult in conversation, yet it’s matched by tantrums, tears, hurting herself, hurting us, loving us fiercely, yet pushing us away with all her might.

Our future is definitely not blighted by our diagnosis, but it is time to ‘get real’, and decide that she will have to choose her own path, and our biggest job is ensuring others let her.

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A Boy Fading

Reblogging this beautiful, sad, honest blog by Crossroad Trippers. Thanks for sharing. Xxx

CrossRoadTrippers

It’s the first day of school and he is worried about making friends, finding classes, and navigating a world that is literally closing in on him. You are nervous as you watch him prepare for his day even though you have seen him do it many other times. Your son is different. Your son has an invisible disease that is robbing him of his sight. You have to let him go although you know he is going blind. You won’t wave overzealously to him as he smiles eagerly at the stoop of the school. No, you will hide your fear with a haphazard smile and he will crack a cautious grin and wave to you anxiously. You are not sure if you will experience the happy anticipation of hearing how wonderful his day was because his previous school proved to be a terrible experience. You pray a new year and…

View original post 580 more words

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Munch and Bowl

  
This evening was a really big deal! Lucas (13) was invited to a “Munch and Bowl” session with a local play session by the Borough of Poole Short Breaks play scheme. It’s part of a government initiative to offer play opportunities for Disabled Children and their siblings. You get a brochure offering lots of events (Trampolining, sailing, drumming sessions for example), all at really reduced prices (approx £4 a session), and register for those you think your child will enjoy. Then allocation happens and you get to fill spaces in your calendar so the long summer holidays don’t look so daunting! I’m not sure every borough runs the scheme, but it is definitely worth a look to see!

So- he’s hit the magic age of 13, so tonight went to Tower Park Bowlplex for his first teenage session from 6-8pm. This is a really big deal for Lucas, who previously panicked when 8pm bedtime struck- having to rush to bed to be on schedule. 

He and I discussed beforehand that the other parents wouldn’t be hanging around helping, as this was about ‘teenage fun’, so he would need to really push himself to be sociable and independent. He looked terrified, but I could see he was working hard to summon the bravery. His blindness and autism combined mean that social situations are tricky for him, yet he truly craves conversation and acceptance.

We met with the organisers, I had a quiet word with them about what support he needed (help getting the frame and ball sorted), what he didn’t need (guiding, touching), then told him there were two nice girls stood either side of him and basically shoved him towards them and told him to talk to them! We had practised some conversation openers in the car- hobbies, music, but to be honest I wasn’t sure how he’d get on.

The group got settled into two lanes, then I walked away so I could see him (he has complex medical needs) but he wouldn’t be able to ask for reassurance and check in with me constantly, which he will do if I’m nearby.

The result was truly staggering. He was the smallest in a group of 5 teens with differing needs (predominantly ASD I would guess), but the group settled into an awesome routine of chatting, cheering each other, and three of them instantly just helped Lucas with the frame/ball/cane situation with no intervention from the sessional workers at all. It was just beautiful!

Lucas is keen to email one of the children as he’s decided she could be a good local friend, and the girl seemed keen too, as she has some difficulties making friends.

Lucas was truly excellent- he demonstrated to me that he is in fact really able and competent to manage himself and make friends in an age-appropriate setting. 

We also realised that he needs some independence in getting contact details to meet up with other teens. He has an iPad, so we are going to suggest he carries it with him to collect email addresses or phone numbers. We need to practise this next skill set with him- how to gauge level of interest from other kids, and how to progress the friendships. His Autism means that he struggles in recognising these cues, and his blindness means getting contact details in a social setting is tricky, but he has truly demonstrated that he can more than hold his own, and actually he needs this level of interaction from his peers now.

So- his teenage years have truly begun, and I honestly couldn’t be prouder, more excited, or more nervous for him than ever! Watch this space!!

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#blindkidscan

  

I have been running Common Sense for a few years now, and some other amazing charities have been plugging hard, reaching more families with Visual Impairments. All of a sudden, it seems,  parent-led initiatives are everywhere. It’s so incredibly awesome, that we decided to come together under an ‘Umbrella Term’ #BlindKidsCan.  Here’s what it’s all about:

#blindkidscan

A movement created to celebrate all the amazing things our Children with Visual Impairments (and multiple disabilities) are capable of!

No-limits Mobility, Access to Braille, Every technological advancement, Medical and Educational provision which are truly child-centred, Toys that represent who they are and how they look, a chance to share experiences with other Visually Impaired Children, and a society which recognises blindness (when given the right support and training), as nothing more than a physical nuisance.

To be taught that everything is possible

Every child (regardless of needs) has a chance to reach for the stars. They won’t all make it, and some will need a lift up there to reach them, but we shouldn’t as a society use their visual or multiple impairments to put a ceiling in the way.

For all these reasons, it’s time to show the world that 
Blind Kids Can!

 
To see our individual projects, please visit:

Common Sense

Project Brailler

MoorVision 

Through Scarlett’s Eyes

Toy Like Me

WonderBaby 

Playful Explorations for Children with a Visual Impairment 

Little Lions Guide

And to watch inspirational videos of our amazing Blind Children, please visit our YouTube Channel!  

      

 
    

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Reading with your blind Child 

 

brailler girl!

 A question came up on a Facebook a Forum: “Do you read to your little ones?What type of books? How do you Keep them interested? Some brilliant answers were given, which I’m allowed to share with you: 

  • I read all the time! I keep the books in a place where my daughter can reach them. Even if she seems uninterested, I finish the story because eventually she’ll come to recognize and memorize. She’s 17 months old. She’s just recently learned to turn the pages. Now she turns them so quickly I can’t read the page quick enough. Which is ok! I let her feel the braille. Or if it’s a touchy -Feely book she will find the textures on the page
  • From an educator’s perspective.. reading to children is SO important on many levels! Repetitive reading is great, too… so don’t fret when they ask for Dr. Seuss for the hundredth time. I’ll also say that if you are thinking about Braille for your child, have plenty of books in Braille and have things labeled around the house in Braille… I’ll also say never underestimate the power of Braille… especially for kids that may have some functional vision or who may use both print and Braille.
  • Touch and feel books or talking books (the ones with the buttons for different parts of the books) are great. Teaching them to turn the page also helps them to feel involved in the story reading. And keep going even if the child seems not interested. Make it a part of the daily bedtime routine. And remember to have fun with it.
  • I have read to my daughter every night her entire life (20 months). Even when she was in a coma for 2 weeks, I still read to her. We read before bed each night. A couple weeks ago, I said turn the page – AND SHE DID! I was shocked. I thought it was a fluke. But she kept doing it and now each book, every night, she has turned the pages. She also loves touch and feel books and the music or sound books.
  • Every day! Use exciting voices. Tell them what’s happening in the pictures. Talk about why people might act the way they do (especially if it’s not good behavior) and what they could do. Stop mid book and talk about what might happen. Once you’ve read a book a billion times and they have it memorized start the first few words of a page and let them finish it. Eventually they pick up the books and turn the pages saying all the right words because they’ve memorized them so well. 🙂 we started out with a bunch of touch and feel books, now heading into first grade M loves Roald Dahl and box car children. She reads Pete the Cat and pinkalicious and fancy nancy books with a little help. Read read read!!! It’s SOOO important.
  • Rhyme is good- all the Dr Seuss, books with funny sound effects, started with “that’s not my…” Books but he tired of them fast. Language was so important to L, so classics were good- Winnie The Pooh, Paddington, now he loves Tony Stanton, David Walliams, Cressida Cowell, Harry Potter. Also- Roald Dahl as the description is terrific! 

    homemade tactile book. doors from cardboard, faces from yarn and felt

     

Thinking further about Braille and literacy:

Books are a huge deal in our house, so we realised early on that we were going up have to get to work learning Braille, then began our journey of practising braille and spending hours buying, making, altering and changing books to make them suitable for Lucas who is educationally blind.

We borrowed a Perkins Brailler and a Braille Primer soon after our son was diagnosed. It was something that empowered us- we refused to consider the possibility of not learning Braille- if he was going to read and write it, so would we! 

In our books- We used ‘objects of reference‘, so had a puppet or toy of the main character who can then be used to ‘act out’ and hold during story time.  We also found props are great- if you’re telling a beach story- have a bit of towel, a water spray, maybe a shell or seaweed to handle throughout. Don’t use plastic imitation bits though- make it realistic. If describing an environment for a story use the actual objects themselves, not plastic visual representations of them. Put simple Braille in the books also, so “looking for the Braille” Is the first task when turning a page. 

I loved making a simple ‘shape book’. I used foam to cut different sized versions of the same shapes-  square, circle, triangle. I made a ‘cover’ from and old study folder, and used treasury tags to bind. I then Brailler labels for each page (I.e. ‘3 small circles’) and stuck these under the relevant shapes. At the end, I had sticky plastic Braille labels with Velcro on the back, and shapes with matching be,cry underneath.  He had  ready to place the correct label under the correct shape (from its description)- i.e. Which label goes under this small circle? He played with it for ages, and I used the same notion same notion for coins, counting, bigger/smaller, textures and the alphabet. Make pages fun with interactive parts, sounds, activities, then cement the knowledge with Velcro sticky black labels. The books were a way of using Braille, tactile pre-Braille skills, and understanding of the use of books, and they were fun, plus they were cheap to make and I could make more for any themes which arose.

 

girl sat at Perkins Brailler

 

 Ideas to help you make your own tactile books:

  • Use a hot glue gun to make tracks, trails, jumps, shapes
  • Wikki Sticks
  • Shopping bag (could Braille the items) book
  • Tactile Book Advancement Group 
  • Booklet from TBAG
  • Get hold of old buttons, stampers,  beads and create trailing stories, teach tracking and matching to encorporate within the text. Obviously be careful of choking!
  • Be clear about what you want the image to ‘say’. When depicting a girl for example, focus on the easily recognisable bits and make those tactilely accurate- so a few strands of yarn are better than plaited ribbon to represent her hair. An item of clothing needs only be a very simple shape as long as it’s made of the right fabric.
  • For a nature book- get outside and choose real leaves and flowers to press/dry/stick in. Drawings and rubbings just aren’t the same!
  • This Raised line drawing board is a good way to make ‘pictures’- but make sure they don’t confuse perspective and become just a tactile version of a visual picture
  • If using Braille, use a proper device and make sure it’s accurate. Depicting Braille in buttons and sequins looks nice, but is often impossible for even a fluent Braillist.
  • Don’t emboss or raise print if the first reading skill for your child is to be Braille! They can look at print letters once they have Braille sussed
  • Get lots of Braille all round your house so it becomes ‘the norm’.
  • Please encourage your blind child to start ‘mark-making’ as quickly as they want with a Brailler. We found Lucas taught himself the alphabet very quickly with his Mountbatten Brailler as it had a speech package.
  • There is now a new ‘Smart Brailler’ by Perkins, which I believe has a similar speech function. Project Brailer are accepting applications for your child to apply for one. 

And my biggest word of advice- please don’t worry what it looks like! If it’s made using real objects, tells a clear story, and opens avenues for more fun, reading and learning, then be proud of it! It’s tempting within a classroom setting in particular to neaten or pretty-up a blind child’s work with images they had little to do with. Please don’t- the parents will know their child didn’t do the work! 

For schools- please take advice from the Sensory Support Team, and use your planning time to question “what are the learning outcomes for this work” “what knowledge or experience does this child need?” rather than ‘how am I going to create a masterpiece from foam depicting the inner workings of a flower?’ Tactile images and posters for display can be decorative, but they’re a visual learning tool, usually not best suited to severely Visually Impaired kids. 

There are some great (albeit some are pricey) books out there for VI kids. We particularly like these:

Ten Wriggly Wiggly Caterpillars. 

‘That’s not my‘ Usbourne series. Often to be found in school fairs and charity shops. 

Hairy Monkey

Braille and raised line books from Maxi-Aids are great. Nice clear braille, tactile pictures, can even be coloured in! 

Tactus books have made some breathtakingly good participatory tactile books for competition. They’re not easy to source, but we’ve managed to grab a few from the RNIB shop in London. Good ideas for making your own books too. 

clearvision Library loan out tactile books, books with Braille alongside print and pictures, which is so important if the adult isn’t a Braille Reader. A school and town library are also permitted to join Clearvision- so if you wanted to enter the summer reading challenge for example, they could order in a box of books so your child can choose to get out a book the same as a sighted child. It’s not a full-proof system, and they often won’t put the books on display, but it’s a start. Incidentally, this years reading challenge didn’t have any literature in Braille format which was a real shame! 

Living paintings offer both fiction and non-fiction books, and uses thermoform diagrams which lots of people find useful. 

Seedlings books are excellent, very reasonably priced, and are sent pretty fast. You can also sometimes sign up to get a free book! 

World Book Day books can be obtained by asking your Qualified Teacher for the Visually Impaired for the Braille/large print option. They are usually made by the Joseph Clarke School, but I’m not sure if that’s the case next year. 

The RNIB offer a talking book library. 

Braille Bookstore has some great books, and cheap products. Order early though- postage from the U.S. to here in the UK isn’t fast.

American Printing House for the blind also sells Braille books. 

    

tactile book. matchsticks depicting windows, lolly sticks for a door

 

  

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(summer) holidays ideas

As a Mum to two children with differing needs (including severe Sight Impairment) and abilities, I’m always on the lookout for ideas of things we can do and play when maybe it’s raining, or we’ve had a big day out and fancy some home-time-chilling.

Her are some of our more successful tasks to date:

Lego Mazes:
I have been looking for ways to help develop Lucas’ spatial awareness, and understanding of representation through tactile maps, and came across this idea via Pinterest by Kids Activities Blog. You create a ‘maze’ through which you have to guide a marble. (Note: I adapted the idea from Kids Activities Blog because Lucas only likes certain cars, and would get very upset if the car didnt drive ‘properly’ through the maze – a marble has no ‘baggage’!)I made the first so that Isla could see how to construct one, and Lucas could have a try with a simple one, then Isla built one, and then Lucas had a try rolling/pushing the marble through the maze. He didnt find it that easy, as obviously the marble didnt roll as such on a bobbly Lego mat, but he did it, and he got better at it! I am wondering if building a larger maze channel would help or hinder, but I can definitely see the possibilities for using Lego which Isla adores to bring play for us all together, and to help with tactile skills, mobility and much more.

blind child uses touch to guide a marble.

  
Balloon Rockets:

An Idea I got via Pinterest from www.discoverexplorelearn.com, Simple task – and SO much fun!

Send a balloon on a ‘rocket journey’ through your house using a balloon, yarn/string and a straw!

We started off making a fairly small length of yarn (as our house isnt that big!), but all of us got excited very quickly, and wanted to try the idea further, so we then made a yarn line through the whole of the inside of the house, and then attempted down the stairs, and for our finale we went upstairs. It wasnt fool proof – it didnt always work, but the kids worked brilliantly as a team, taking turns without being prompted, I got Lucas fully engaged in a task, and he worked on equal footing with us. As a bonus, he also got over his fear of balloons as he loves the noise they make when you let them go and the air comes out, and Isla discovered inner reserves of puff and managed to blow up a balloon all by herself.

  
   
Next step: Balloon powered Lego cars!

My lovely friend Lerryn at Jellybean Boom tried this, and made a video.

Other notions and ideas to follow.
In the meantime…

http://www.wonderbaby.org has a blog post to read here

I have a Pinterest obsession, so order my boards over there to give me some inspiration:
Blind Child

Kids Crafts and Fun

Food (because we all love to plan menus, Braille recipes and eat! More of this to come).

I would love to hear any cool ideas you have had, any recommendations for places to visit!

Sarah xxx

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15 Minutes

This was a post I made a while back on my sewing/family blog Sew Now We Are Four. 

I’m posting it now as I know that I can’t be the only parent drifting towards coping strategies when school restarts after the lovely summer break. Hopefully food for thought for me, and maybe one or two of you? 

Mornings have been a struggle, a chore, and quite frankly a pain in the arse for a while now. Only school mornings – those times when I expect something of the children, and myself, and always try to get Lucas to school on time and never quite make it – or if I do, its only just.So – I got to thinking what are the problems? What do I have control over? What can I do as the grown up? 

The ‘issues’:

Lucas isn’t good at looking after himself quite frankly – he is blind, missing the whole middle of his brain, and therefore can’t achieve simple tasks like buttons, zips, and so on. Add to this the fact that he has Aspergers (making him have to do every little thing in the same order without fail), and having Sensory Processing Dysfunction (meaning that socks can take up to 20 minutes to ‘feel right’), plus the huge amount of medications I have to give him – which he takes like a dream, but it all takes time!


Isla just doesn’t do mornings at all! She sulks, cries, wont eat, wont get dressed, needs holding all the time, is refusing to wee. Almost all the time she is an absolute joy – mature, funny, helpful, incredibly self-reliant – but sadly the times she isn’t are when I am at my most pushed and frazzled (yes, I know there is a connection!).  


Me – I panic and stress. I lose my rag. I am also incredibly clumsy, and knock over drinks, trip down the stairs. I am also incredibly bad at time keeping just for me – never mind when challenged in this way!


What can I change? Lucas – not in a million years, quite honestly! Isla – time will certainly change mornings for Isla, but if she is like her Dad, not that much! Me – I have always been a short tempered stress-head, and will always be a short tempered stress-head!

It turns out that today it was pretty simple! – just getting myself out of bed 15 minutes earlier this morning turned from the picture painted above into this: 

  


Now, I am a realist (some of the time ;-))I know this wont always work so effectively, but just for this morning I enjoyed being a Mum getting her children ready for school to the best of her abilities, and they went to ‘their places’ way better prepared and centred than normal!


Hurrah me today – go Team Sar!

Roll on tomorrow 🙂

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