Sharing Braille with Sighted Classmates

I did a blog article for  Perkins Products' blog. Check it out.

Sharing Braille with Sighted Classmates: A Step-by-Step Guide

Abby's Blindness Walk "commercial"

To make the video full screen click the X in the lower right. Don't forget to make sure your sound is on.

Abby is walking again this year.  I love this video.

If you want to support Abby click here :  Donation link 
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video description
 Scene 1 Abby does intro
Scene 2 Abby reads braille on a iPad & Refreshabraille18 
 Black Screen and Text reads"Abby is walking in the NH Association for the Blind's Walk for Sight on June 2 2012."
Black Screen and Text reads"She has made a goal to raise $1000 this year. She is walking on  Team NFB NH Wozits and would love for you to join her or donate."
Scene 3 Abby reading braille in a book with text "Many blind children are denied literacy and are not taught to read"
Black Screen and Text reads" Due to the NHAB's generousity NFB NH which includes the NH Parents of Blind Children will get half of we money raise back."
Scene 4 Abby using gym rings on the playground
Black Screen and Text reads "Abby is NOT extraordinary because she reads, plays and gets around." 
Scene 5 Abby climb a climb wall on the playground and waving on the top
Black Screen and Text Reads "The only difference between Abby and her sighted friends is that she needs to learn to do things non-visually"
Picture of Abby going down a esculator with instutor with sleep shades on text reads" Abby learning to use the esculator at the NFB National Convention 2011"
Scene 6 Abby walking towards camera with cane
Scene 7 Abby being silly with her brother Sam
Black Screen and Text reads "Help Abby reach her 
goal. Find infomation on how to join the team or 
to donate from at www. teamabby.net or from this video's notes.:"
Scene 8 Abby typing on a Perkins Brailler outside
Scene 9 Abby back on the playground using the gym rings tshirt reads " Faith is taking the first step even when you don't see the whole staircase" MLK JR

A Year, A Journey

It was a year ago today that we got the DNA results that Abby was officially affected by Leber's hereditary optic neuropathy. That it was the cause of my 6 year olds vision loss. It wasn't just Abby but much of my family that could be affected one day. My son, myself, my sisters and my nephews.

Abby thinking

Its been a journey. At first the journey seemed to be full of does,diagnosis and the mystery but really the biggest challenge is living day to day. Its making sure Abby gets the best education she can. Its making sure that she can acieve every thing she was always meant to do. I have realized that my little girl isn't that little anymore more and she can really handle this.

Abby putting leaves in her hair

 A year later she is reading and doing amazing well in math. She still struggles catching up to her grade level in reading but I KNOW she will fill the gap quickly. Tonight she did her math homework almost all by herself. She asked what the questions were (there was only two) She then put paper in her brailler and answered it all on her own. She didn't want any help. I am so proud of Abby. I am proud of both my smart children. She has been enjoying not only reading with her me but with her father. She loves to share with us the contractions she knows. She loves it when she knows things that other people don't know. The future seemed so scary a year ago. Now it just seems like a maze that we may get lost going the wrong direction every now and then but we will find the way out and I KNOW Abby's future is bright.

Homemade Tactile Drawing Board

I made Abby a tactile drawing board.  This is not an idea I made up myself. Actually parents and teachers have been making these for years.   I saw one at the NFB convention in July.   Its simple and Abby loves it.  Sometimes with kids its the simple things.

I realized a few days ago I had all the supplies at home to make one so it didn't cost me anything.  If I had to buy materials it wouldn't have cost that much money ether.  

All I used was

a piece of cardboard larger than a piece of paper (I used to because mine was thin)
Duct tape
screening (like window screening)
scissors (to cut the screening and cardboard)

I had this coated plastic screening already but the metal stuff would have worked great too and I still may do one using that kind of screening.  Different materials would give a different texture and impression.  Abby has used crayons, colored pencils and markers on hers already. She gets excited about how different they all work with it. (when you flip the paper over you can feel the picture on the other size)  You simply color/draw over the screening.  It doesn't just give a the user texture feel but it makes a sound when use it and it vibrates the writing instrument while in use.

I like being able to do things like this for my daughter.

In the classroom.

Abby was in tears when I picked her up at school.  She was 'pulled out' of her classroom during her favorite time of the whole day.  Her wonderful classroom teachers reads to the class a new chapter in a book at the end of school.

A random picture Abby took  herself with my camera

This is common for a school age child who has some special education services. My son Sam used to deal with being upset during the fun free time for Speech and Language services.  I hear a lot from Abby about little things she missed here and there.

Its hard. Abby is an active member of her classroom. All blind and visually impaired children are.  I also know she can't handle many services outside of the school day. It gets to be too much for her. She get orientation and mobility right now after school once a week. She gets most of the vital services she needs during the school day.  As a parent I need to find this balance.  When do I speak up (this time I did).  When do I explain to Abby that sometimes she needs to leave the classroom so down the road she can take part of the class more actively.

Oh I was able to download the audio book from the National Library Service BARD so she can listen to the chapter and to be caught up with her class.

It can be very exhausting  to move from one issue to another issue.  I realize this is just the start of an amazing, challenging journey and one day Abby (and Sam) are simply not going to need me like this anymore.

Busy Start to Summer

Well the kids have finished the school year.   I have a feeling summer is going to go by so quickly that we will find ourselves in the start of the school year in no time.

Abby has just finished the first week of two weeks of extended school year (summer school for braille pretty much) .  She is having so much fun. I have also been encouraging her to read. The only way she can get better is to practice. She likes to be motivated by cash.  Smart girl.

Yes Abby is really touching a penguin at Seaworld

The first week in July Abby and I were in Florida for the National Federation of the Blind's national convention and NOPBC conference.  So much in my head I am slowly working through it all but it was great.  I promise to do some blogs about it.  Abby leaerned a lot and  I learned even more. My sister Tricia even came.

Abby exploring with with sleep shades on. 

Abby has some other things coming up this summer. I will share soon.  So not a lot of rest for her.I have started to realize that I think we have passed a year since she became affected by LHON.  (she became affected well before we first realized in August.)  Crazy year and I think on this side of it all it was much more good than bad.

Abby posing in front of a Shamu sculpture. 

Abby and Television.

Abby has always has always been a big television watcher  (Sam is the same way but he uses the computer like Abby watches the tv) I had thought that perhaps her television viewing would not be as frequent.  (yes bad mommy alert I let my children watch TV)

Abby watching Arthur on TV

Do you know that Abby is able to have extra descriptions on many of the shows she likes to watch. Many  PBS stations including WGBH broadcasts a lot of its children's programming in DVS (Descriptive Video Service)  Think of it like closed captioning for the blind. Instead of words on the bottom of the screen its extra audio that says whats on the screen.  The issue is the channel need to broadcast it (NHPTV doesn't due to funding)  and you need equipment to get the extra signal (Comcast Digital Television has it as an option under audio setting for the cable box)  There is also DVDs that offer it as a setting (bonus!!).  

Its so easy to assume Abby sees everything on the screen. She has some vision right? She actually misses a LOT of whats on the screen. We went to the movies a few weeks ago and Abby missed some key features of the story.  Its amazing what you miss when you can't see everything.  We have only been aware of DVS for a short time and Abby LOVES it.  Its such a great service and i hope it is able to grow more.

Last week of School

School is almost finished here.  The last day is Thursday.  What a huge year this has been for Abby.  She started the year with some strange mystery vision problem and is ending it as a reader. She has had such a great education TEAM.  She has some great members of her team.  I wanted to take some time someone special right  now. 

Abby with Mrs Alberici

She has also had a very special assistant Pam Alberici in the morning. Pam delted with Abby sour mood, helped get her focused in learning, worked with her amazing TVI to help Abby advance in her braille reading.

Abby has had a really good year academically regardless of all her challenges dealing with her vision.  Pam and other members of her team have a lot to do with Abby's success.  What she has learned this year will have life long benefits. So I want to take some time and thank Mrs Alberici.  Thank you.  Thank you ever so much. There is nothing I can do to express my personal thanks.  I know you had a huge impact on Abby and she is very found of you.

Uno Time..

Abby has taken a liking to playing Uno. A few weeks back I spent a day putting braille on a set o Uno cards.

Perkins Brailler with Uno cards

There are places you can buy Uno cards with braille already on them already but it was fun to add the braille myself.  Abby has really enjoyed playing Uno. She wants to play every single day and has beaten all of us at least once. Sam doesn't like playing with her because she always beats him.  She can actually see a lot of the cards because they are large and bold but she uses the braille when she is isn't sure. I am hoping to modify other games for Abby. She loves it.

What braille means to Abby.

I can remember the first time I heard the word braille  related to Abby. It was this past November at a school meeting.  I remember feeling shocked.  Hurt. Surprised.  Abby can see, she just can't see well. I knew nothing about braille. I only knew that blind people used it to read.  The idea of reading with touch was foreign and weird concept to me. I wanted to fight and say No she doesnt' need braille but thankfully I  have a pretty open mind. The teacher of the visually impaired who had done Abby's functional visual assessment was a professional with experience and I was a parent who hadn't come to terms with the fact her daughter was blind.

Abby reading braille in a phonics book.

Print really isn't isn't accessible for Abby at all. If its really bold and large (larger then standard enlarged print) and she puts it right to her face she can sometimes see a little of it.   When Abby started first grade she still was not reading.  She has all the basics and has always been a very bright child. She just wasn't reading.  I realize now that she was delayed because of her vision issues. When I struggled over the summer to try and help teach her to read  I had no idea and felt defeated and confused.

Something amazing happened when Abby got introduced braille. She slowly started to read.  It did take some time. She had to learn the basics of braille before those dots meant anything to her fingers. She fought being taught something different than her peers.  It was hard work (and still is)  There was something special that happened  a few months ago.  She started to read.  READ.  There is nothing more basic in a child's education then learning to read.

I just spent some time with Abby reading on our porch and its amazing. Its fun. Sometimes there is a reading mistake, sometime there is a mistake feeling a letter, and sometimes its a braille contraction but she keeps going.  She has a little bit to catch up with her grade level but I really think she will be there come second grade.  It all takes practice and thats something I can give her.

Do you know there are blind children who are given inadequate braille instruction (or not at all) in this country.  Think about that.  No child that benefit from learning braille should be denied. Its that simple. Listening to audio books and using text to speech on a computer is not a replacement for reading.  They are all tools but they don't replace reading.   Abby was truly lucky.  I cringe thinking about where Abby would be if  she wasn't given braille.  Braille is a gift I am thankful my daughter received.

Lemonade

Abby playing in a big puddle with her cane in the rain.

Have you ever heard "When life gives you lemons... make lemonade"  Abby has.  

I caught this moment a few days ago. It has been raining. I was I just picked the kids up from school and I was trying the hurry the kids to the car so we could get out the rain.  Abby had rain boots on and decided it was a good time to use them and splash around in the rain. I tried to get her to stop but she saw a moment she wasn't going to let pass.

Abby is like this a lot.  Through everything that has happened with her the past year she has remained remarkably upbeat.  

Yes she has had times when she has been down but all and all she is doing pretty well. She has kept up with math.  She is also slowly making progress with reading.  She is very motivated. It just takes time and progress. Losing ones vision is a traumatic experience.  Abby just wants to be a kid and doesn't really have time to waste feeling sorry for herself.  

She is still rides her bike. She rides mostly on closed roads and at the park but she is still riding. She learned to ride her bike without training wheels last summer. This was the same summer she slowly was losing her vision.  

Abby rinding her bike on a closed road

 So the next time it rains don't forget to play in the puddles. 

Making it Work by Carol Castellano

This is a recommendation of a wonderful book I recommend for every parent of a blind/visually impaired child.  Its my plan to get this book in the hands of my child's educators.   Its really better read than explained but some of the key points of the book are...

• understanding the basic ins and outs of the education of a blind child
• how low expectations are a virus in a blind child's education
• what common issues to watch out for

If you search for the book online you will find its listed at many bookstores for insane amounts of money (I actually saw it listed some place for $100)  Don't worry  visit the NFB Independence Market its a well worth the $25.00 that it is listed at.
http://secure.nfb.org/ecommerce/asp/product.asp?product=703&cat=47&ph=&keywords=&recor=&SearchFor=&PT_ID=

Passport to Adventure in a Black Box

A few days ago this black box showed up to the house.

Large black plastic NLS shipping box.

It was all bundled shut. I had no idea.  It was very exciting.  I realized that it was Braille books from the Braille library I had signed Abby up for a week before.  We had been getting talking books for months now but this was our first shipment of Braille books. Our state doesn't have a Braille library so we have another library that services us for Braille books. It was so exiting to open it up. Inside was 6 children books with Braille. It was so exciting.  Which ever librarian who selected them did a great job.  All where great books.

Abby reading and enjoying some books

Its so great to be able to borrow books now instead of buying them all (though its great to buy too)  She has been so motivated to read.   We had a great fun reading on the books together last night. Who doesn't love library books.  Its going to be great reading this summer.

The joy of reading.

There is nothing quite like reading.   To curl up some place quiet and get lost in you head. I love to read. I have a lot less time now to read but I still love it when I have a chance.

Toddler Abby enjoying a book.

I have wondered if Abby would ever get excited about reading.  She struggled so much with Braille (and still does)  I know she would get through learning Braille to do what needs to be done but would she read for fun? Well something has changed. She has stopped fighting.. She is getting better and better.  The last few days Abby has actually gotten interested in more advanced books. They  are still a little advanced for her but she really wants to read chapter books.  She want to read fiction. She has seen how much her brother enjoys reading and wants the join the crowd. The biggest thing holding her back right now beyond just becoming a stronger reader is contractions.  Contractions in grade 2 Braille are best described as short hand or abbreviation of words.

I now can see Abby this summer reading on a beach enjoying a book.  Its very exciting.

Orientation Adventure.

(Abby's cane at the curb)

Abby has developed a great sense of direction. (well maybe she always had it)  This week she has school vacation so I got her involved a day camp to keep me sane (and so she could have fun) .  Its Dr Seuss themed and she loves it. Well Monday they walked to a park a few blocks away from the camp's location.  We arrived a bit early today  so she wanted to show me the park.  She walked to the door where her camp was and turned right around (she needed to know what direction to go)  She then walked me right to a park.  At one time stopped at a curb and said "See this tells me that we are going the right direction"  She actually talked about the curb a few minutes before we got to it. She told me it was coming (she called it a step).  

(Abby's back walking)

(Abby smiling with cane)

She was so proud to show me that she knew how to get to the park.  It was very exciting for me. She had never been to this location before.  She just had to get from her original starting point and knew the way to go.  Its days like this that she shows me she is really going to be alright.  Next time i get lost I am going to ask her for directions.

Abby at the playground she earned it

Blind is not 4 letter word.

Abby is blind.  I realize some people get confused with that. Many people when they hear blind hear "no vision" Abby does have some vision. I like to say Abby has enough vision to get herself in trouble.  Sometimes the vision is more usable then other times. .

Abby inspecting an candy on Easter.

She is still blind.  I used to use "visually impaired" more often.  People get that. They get when they hear visually impaired that it could mean some sight.  I still use it but really I find blind better at describing Abby. While she doesn't always 'look blind'  that doesn't change that she is.   It has a lot more to do with how one functions in a sighted world. She can not read text at all (well if its too her nose and its big enough she can see some)  She can pass right by me in a crowded room.  She can easily get lost with me  just a few yards from her.

Society has made blind a bad word. Being blind is a condition that is feared by many people more then other much worse conditions.    When people talk in hushed tones around Abby she picks up on that and feels she has something to be ashamed of. Abby will hide her cane sometimes in pictures because she is still embarrassed.  Abby shouldn't feel  ashamed that she is blind. Its just something that is part of who she is like her blue eyes and her bubbly personality.    She should be proud she is reading (in braille)  She should feel proud she is moves about safety (with a cane).  She should haven't to worry that someone is going to see her as broken just because she experiences the world different then others.

I can get Abby the tools she needs to be successful, Its harder for me to change the world's opinion of blindness.

Some related links:
A definition of blindness  http://www.nfb.org/Images/nfb/Publications/fr/fr19/fr05si03.htm
Blindness—Handicap or Characteristic http://www.nfb.org/nfb/NOPBC_LA_Attitudes_About_Blindness.asp?SnID=1598899775

Abby the teacher.

Abby is doing an wonderful job learning Braille. Its slowly opening the door more for her to have access to the education everyone else receives.  The educational world is designed to teach children visually.  Abby is slowly becoming less and less a visually dependent learner.  She is already requesting books with 'fake stories'  (fiction).  Soon she will be able to curl up with a book like her brother and just read because she wants to.

Abby is getting better at expressing what it means to be blind.  I find it a step in helping her self advocate for herself, which is a very important skill . She still deals with a little embarrassment usually involving her cane.  She wants to be like everyone else she hasn't realized yet that everyone is different in some way or another. Sometimes she likes to pretend she is sighted.  I am find it more has to do with how other people treat her.  She isn't broken but many people still treat her like she is made out of glass.

Abby took part in her school's health fair yesterday.  She brailled peoples names.  She did a great job.  She actually was very proud.  I think she is starting to realize that while learning Braille these last few months has been hard its actually pretty special. I am encouraging her to talk about it more. She not only can educate others but its really helping her realize she has nothing to be embarrassed about.  She can read with her fingers can you?

The Quest for role models.

One of the things I realized early on is that I need to help Abby find role models. People who are blind have done amazing things. There are also some sighted people that can inspire Abby too. Its about Abby seeing the opportunities in her life not the limitations.  They can be blind or sighted.  They can be famous, a family member, or just someone they meet that inspires them.  Abby was concerned about using a cane and being laughed at a few months ago. She met a blind peer who used a cane and she hasn't really had a problem with it since.  Thats the magic of role models.

Today we had the chance to learn about Fanny Crosby.  A very prolific hymn and poem writer. Who lived more then a hundred years ago. She was also blind.   Abby really seemed to understand and enjoy learning about Fanny.  What she was able to overcome and what she was able to do. We also got to meet a really nice high school senior who had a wonderful guide dog Otis.  She was so kind to Abby.  Went we first met her Otis was working but she took off his harness and brought him over to Abby so she could meet him.  Learning about Fanny and meeting this young woman were both so important to Abby.

Abby's world is opening up everyday of the things she is going to be able to do. She is realizing her challenges are not as big as she first thought. Nothing is going to hold Abby back.

Independence

Abby has always been independent. Since she was a very active toddler she has wanted to do everything herself.  I have always worked hard at trying to teach her how to be safe and no make crazy choices.  Sometimes that didn't go so well.

Breaking in the fridge

Doll and Girl   yogurt maska.

This trait caused  some many disagreements and MANY messes. (I have hundreds of these pictures. These crazy mad cap adventures STILL happen with Abby everyday.)

Abby does struggle at times doing things that used to be easier but thankfully she hasn't lost the desire to do to them.  I feel I have to let her do things herself or help her learn the steps to do them safely. Its a really hard thing to do.  I think this is true for all parents and children. 

Abby has taken a liking to oatmeal recently.  She wants to prepare it all by herself.   I help her still but I let her do most of it.  The only thing she really needs help right now with is the very hot water.  When challange comes up like using the microwave I find ways to help Abby do them herself. 

 I am working very hard letting Abby 'go' and do things more independently. To do the things that other kids do  I can't wrap her in bubble wrap. 

Yes that is Abby going up and getting to the top of  a climbing rock wall. She had to feel for each footing and hand rest.  I asked her and she didn't really see anything. She just kept going for it. I am so proud of her. If you watch the video she has some issues but she kept going. She didn't give up.  This is so much like Abby every single day.  She struggles but keeps going.  She has a problem with something she practices and goes for it.   This was Abby's second time on a rock climbing wall. The first was 15 minutes before this video was taken.  The first time she just went for it too.  

You can hear me cheering Abby along.  Actually you don't hear me until half way.  I waited till she needed it.  Abby is the one that is in control of this journey.  I can't make her independent. That is something Abby needs to do herself.  I am only in a supporting role.  Abby is the one that is living this.

It is hard on Abby that she needs some reliance on others due to her visual impairment. She fighting a bit of the help she gets at school but she knows right now she needs it because in a few years she won't need it at all.  Abby waits around for no one.

Wonder under the big top.

We had a great time today at the Big Apple Circus. We went to the Boston performance of the Circus of Senses.

They offer a free show to visually impaired children and their families.  They had these special headsets that gave the visually impaired a complete narrative of whats going. Abby felt completely involved, I loved watching her giggle and laugh and she was not even facing where the action was many of the times.  She couldn't' really see what was going on.  She can see movement and lights.  She really loved it.  I loved hearing the other kids giggle and laugh too.  The whole family had a very special time together where we all could enjoy something special.

There was a point that when I looked at Abby at one point she had the beautiful look of wonder on her face.  I don't see that as often anymore. She is still learning how to be less visually dependent.   I started to cry it was so beautiful. Thank You Big Apple Circus.