Perception

There is so much I can do for Abby that I have control of. I can work at making sure she developes a positive view of her  blindness and how that affects her self esteem. I can work hard at making sure she gets the best education I can. (check it out Abby is in Future Reflections) These are things I can control. I have realized there is  one thing I can't control are peoples negatives perceptions of those that deal with blindness.

Two things things this past week showed me again that Abby's biggest challenge isn't her education or mobility. No her biggest challenge is dealing with other low expectations of what she and other blind people can do.

First I watch MTV True Life's "I'm Losing My Sight"


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True Life - Full Episodes

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It includes the story about Jeremy who is affected by the same rare disease as Abby.  Since this show he has become the blind golf world champion and has raised tons of money for research.  It was during Blanca's  story that something really hit me.   It was a simple scene Blanca was applying for a job. A job she should have had no issues doing than the interview found out about Blanca's blindness and the tone of the interview changed.   It was very alarming for me.

The second thing is I read a blog by an author. A young woman who was published right out of high school. The writer's name is Koby Keplinger and she also happens to be blind.  When she was first published way to much attention was put on her blindness which really minimized the accomplishment. She made the desision not to discuss her blindness and would even 'hide' it.    Her story is remarkable because she was published so young NOT because she she is blind.  Its actually kinda funny with all jobs and occupations out there there is nothing remarkable about being author who is blind.  Read her blog here. http://kodymekellkeplinger.blogspot.com/2011/11/confession-about-my-disability.html

Abby is a bright, caring sassy and funny girl.  That didn't change when she became blind.  She is the same girl.  Its how the world sees Abby that has changed.

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.

Homework ugg.

We are slowly getting into the grove of things for the new school year.   Abby has homework Monday through Thursday night.  This includes reading, writing and math will be added soon.  Sometimes it leaves us both in tears. We are working on it.

I realize a few things with homework. Abby can't read when she is tired.  I need to have her do the reading part before 5 or I will have to give up if we start homework later. She actually reads pretty good when she is focused.

Abby doing her homework at the beach. Using her Perkins Brailler 

I realized if I am getting frustrated its time to back down.  She is doing well and gets better at doing her tasks everyday.  I look forward to the day reading isn't a struggle.  Its so funny because she does great with writing.  She even took her brailler on a weekend trip to the beach.

new school year jitters.

Today the kids started school for a new year. Abby into 2nd Grade and Sam into 4th.  Sam really already seems to have transitioned quickly into a a new classroom.

Sam getting ready for a great new school year. 

Abby had a great first day of school with lots of adjustments.  A new classroom, a new teacher, new rules and two new paraprofessionals.  I have a good vibe for this year and remain very hopeful . The biggest challenge Abby has is she needs to become stronger in reading.  Abby wants to be a 'super reader' NOW.  She is becoming frustrated with the time and practice it takes to get there.   Its a balance. She is in a hard phase. She goes back and forth between a reading issue (word blending, letter sounds,) to braille issues (contractions, and letter recognition)  It all takes practice and I know she will do well.

Abby ready for a new year.

 She was very excited and she picked out a bunch of books from home she wanted to bring into to school and keep there.  It was the first time she seemed excited about school the whole summer. (by the way she had a great summer and i will blog it all soon)  

NO....

No is such a simple word. Its also a strong word.  Its a black and white word.

This past week when inquiring about a children's art class I was told that "Its not safe for someone who doesn't see" and "your son would welcome to sign up"

Words hurt. Its doesn't make it any less hurtful when the person didn't know what she was talking about.  That I am sure if I had pursued it she would not have been denied entry into the class if there was space. It just hurts.    


My son will never forgot that someone didn't think his sister could do something. Something even he knows she would do.  I will never forgot the first time that someone didn't believe my child could do something just because she is blind. 

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.

Sharing a Link

Abby was feature on the 20/20 Vision Quest blog by Randy Pierce.

http://www.2020visionquest.org/Blog/?p=1102

Randy is a great guy and I am so glad to had the chance to get to know him, his amazing guide dog Quinn and his wife Tracy.  Find out how Randy is a huge inspiration by what he has done. http://www.2020visionquest.org/  

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.

Team Abby ROCKS!!

This past Saturday the New Hampshire Association for Blind's Blind Awareness Walk was help. Our team "Team Abby" did great. We estimate our amount raised was $3506 (we haven't gotten an official number yet) We even got the award top fundraising individual team. I am so proud. I named the team "Team Abby" because from the very start so many people have worked as a team to get Abby what she needed this past year (teachers, doctors, family and friends).    Team Abby Rocks.

Team Abby group picture in front of NH capital building

Walk tomorrow

Not to late to join team or donate www.teamabby.net

Here is our team banner

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.

Always Learning.

I am realizing I am being schooled as much as Abby is. There is so much out there still to learn.  Its over whelming and exciting at the same time. There is so much to keep on top of.   Feels like my  head is spinning.  I have come such a long away since October.  I read what I wrote back them and it doesn't sound like me.

I have started to read "Making it Work:  Educating the Blind/Visually Impaired Student in the Regular Classroom"  by Carol Castellano.  Its a great book just what I need. I have and have had high expectations for Abby.
I am learning that I shouldn't try to protect Abby too much.  That I shouldn't over protect her.  That there is techniques I have ever heard of.

I wonder if there will ever be a point where I am no longer learning.  I expect as things change I will find more to learn.  I don't think it ever ends.

Abby is always learning too.  I got back Abby's most recent math assessment (they do one when they finish a section in their book.)  She got a 100%.  Abby is at grade level for math. (maybe a little better)   It was so much fun going through the different pages.  They adapted the assessment in so many different ways that it was impressive.  Some pages where enlarged, other had braille, other parts where done orally using larger tools (like her Braille clock)  and other parts had puff paint. She is slowly getting better at reading too.  She is working so hard all the time.  What an amazing thing Braille and other adaptations are making in Abby's education.

Weather is nice O & M instruction on the road

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.

Abby's Video

Abby and I made a video promoting the blind awareness walk we are doing for the NH Association for the Blind. I think its pretty cute if I say so myself.

Untitled from Penny Duffy on Vimeo.

There is some text in the video thats completley unaccessable by text readers. (this is something I have never thought about before) I put all the text in the video on the video's description which can be found here: http://vimeo.com/22150554

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.

New York City Adventure.

Saturday Abby and took a day trip to New York city to go the the American Girl Place.  We had an amazing adventure.  Abby and I love American Girl dolls.  I think I love them at least as much as she does.   The dolls are for accessible for her with her visual impairment.  The dolls are easy for  her to manipulate with touch and they are large enough for her to still visually enjoy them.  They have many cool accessories but sadly not really any visually impaired themed items. (though that was easy to fix with a craft project) Abby has 7 .. yes 7 American Girl dolls. This doesn't count her Bitty Twins and Bitty Baby. There is many reasons for this but lets just leave it at both Abby and I are BOTH fans.

Now back to our magical day.

We walked up 5th Ave from where we were dropped off  near the Empire State Building to American Girl Place New York City.

I was so proud of Abby she used her cane great the whole walk to American Girl. She sometimes fights using her cane but she needed it and she knew I expected her to use it so it was never really an issue in NYC.  It was really neat to watch her play with different textures on the ground.

Abby and Mommy at the American Girl Place cafe

We arrived after a short brisk walk.  I must say from almost the moment we walked in to till the moment we left I was impressed. My sister set up a personal shopper for Abby. Its a free service offered at American Girl Place. You need to make arrangements for it in advanced but its well worth it.  I really recommend it for any special needs girls.  Our personal shopper Robyn was like an ambassador.  Helping Abby have the very best experience possible.

 The most special experience she set up for Abby was how Abby's doll got her hair done. Instead of Abby having her dolls hair done  in the normal spot they had it done in the personal shopper area.  Abby would never have been able to watch her doll's hair get done.  Its one of Abby's favorite thing at the American Girl store and she wasn't going to be able to experience it at all. In moving it to the other room she was able to get real close, ask questions and even help out.  There is no way I can't ever really express how special this was for Abby.  How speical this was for ME.  Abby has been through a lot with her vision loss but American Girl made it so Abby could just feel like a girl having a wonderful day.

Abby watching her doll get her hair done. 

I could keep gushing out this special day because American Girl (and Robyn at American Girl) hit a home run with our experience.  The store is well lit.  It was easy for Abby to navigate.  The floor were clean.  I am sure things end up on the floor but the people who work there kept it well picked up.  We even learned something new. There is escalators and Abby did amazing going up but when it came down we realized Abby really shouldn't be going down them at all.  I am thankful she never got hurt so scary.  We learned .  (there was plenty of elevators so her going down was never an issue). 

My sister Tricia had arranged for the personal shopper service and decided to surprise us with meeting us there.  Remember that little girl who had a horrible  birthday a few weeks ago. Well I think we replaced those memories with this magical day.

Abby with her birthday cake. It was birhtday outing even a month later.

After our amazing lunch it was time for us to leave but we had  chance to explore the city some more. Abby got to go to Rockefeller center (and said the skaters look like penguins from what she could see) and Time Square. She loved the lights in Times Square.  

Abby in Times Square with my sister Tricia

Join our Celebration

We are going to celebrate.  A celebration of Abby and everything she has over come this year in school.  A celebration of Sam an amazing little boy who has been so supportive of his little sister. A celebration of all of  us of making it through year 1.  We are Team Abby.

So if your in NH join our celebration at the New Hampshire Association for the Blind's 8th Annual Blind Awareness Walk-A-Thon on June 4th in Concord NH.  Join our Team or make a small donation.  You could even start your own TEAM (for many different reasons).  If you are from a different state look for another event run by a different organization in your state.

To Register to walk in the NHAB Blind Awareness  follow the links and the registration fee is $15.00 for Adults and $5.00 for children. It includes t-shirt, lunch and entertainment.

Celebrate.

Some things seem worse at first. ...

I was watching Bones (its a television show)  Thursday night.  One of the interesting story lines of night was two of the characters who are expecting a baby in a few months deal with being carriers of LSA (the other Leber's genetic disease , unrelated to what Abby has), Its a disease that ussally causes complete blindness.

 Halfway through the viewing I heard Abby yelling for me. She was not feeling well at all. She had a fever and was feeling icky.  I got her some medicine and she can out to sit with me while I finished the show.  She heard the two parents talking about the chances their baby could be blind.

Abby first asked: Why they are upset and sad?

My first response was they were worried about their baby being safe.  Abby said "Then the baby  could just use a cane"  
Then I responded  that the parents where sad about all the things the baby wouldn't have a chance to see and the struggles with learning. She understood that one but sort of shrugged her shoulders and implied it still wasn't a big deal. I don't think she implied its not heartbreaking to deal with a child (or to be that child) who is blind  but she also didn't' see it as the end of the world ether.

Abby sees her completely blind peers as amazing.  She also know that blind people can do amazing things. I am always sure to share with her positive blind and visually impaired role models.

I recalled earlier in the program.  (before Abby woke up) I watched at they talked with almost hushed tones that the baby could be blind.  I kept finding my self thinking. "Oh common on its not that bad". Then I remember how devastated I was when I found out about Abby vision loss.  The fear, the pain and sadness.  It like I was walking around in some fog.  I still cry and get sad. Dealing with vision loss is like a death in the family and you never quite get over it.  In the beginning you deal with not only the grief but the unknown and sometimes the unknown is be very overwhelming.

I am grateful for the vision my daughter still has but even if she ever became completely blind It not the worse thing that can happen by far.

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about the "other Leber's" http://www.wonderbaby.org/articles/lca-faq.html

Abby's "Leber's"  http://www.lhon.org

Fantastic Day!

Its rainy yucky weather outside and I  a horrible cold but today is a fantastic day.

Two big things happened today for Abby.

Her class has 'library' once a week.  Some weeks at library is actually computer.  The kids learn early computer literacy skills.  Today her TVI made a computer accessible to Abby with an magnifier and text to speech software. (Zoom text with reader)  Abby is so excited.   I can't wait to set a computer up for her at home.

The other very special thing today is Abby brought home two books she has read at school.  Let me say again. Two books Abby has read at school.  They Brailled some early readers for Abby and she has been READING them. They are the simple repeating books but she is READING them. A reader. Abby.  I am so happy.  Overjoyed. What a special achievement for her. I am so proud  of her. With some more practice she will be breezing through books.

Finding my way out of the maze.

Me with my hero Abby.

The last few months have gone by so quickly.  I feel like I have been running around trying to find out information and I got lost some where from underneath it all. I am hungry for information about Abby condition, about other children who have visual impairments, about other children learning braille, navigating the special education services, looking for related organizations, and information about programs and services out there that can be of help to us.  

I have found so many great things: A community of people who are affected by the same disease, other parents of blind and visually impaired children, organizations that supply free Braille books and becoming part of organizations that are related so Abby and I don't feel so alone in this world. 

Sometimes I feel overwhelmed lost in it all.  I feel like I have missed so much. That I am simply not doing enough. Today almost 5 months from our diagnosis I am still find useful and relevant information. 

I am a parent. Its my job to help Abby navigate through all this so that she has all the tools she needs to be a success.
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I have updated all the articles on the top bar (ie Through Abby's Eyes, Resources....)

Legacy of Blindness.

One of the interesting aspects of the disease that affects Abby is that its a mitochondrial genetic disease. Its actually very easy to follow it in ones family.  Abby got the gene from me, I got it from my mother, my mother got it from her mother and so forth.  While males have a greater chance of becoming affected they can not pass it on to their children.  Females pass it on to a 100% of their children so that means that my son has the gene as does all my sister and their children.

I have been come very interested in tracing the path of LHON in my family.  Trying to track down other related people who could become affected and/or pass it on to their children.  I wish I had known.  I am thankful having a family history to go us to our diagnosis quickly.  It takes some people months to even years to get a diagnosis.

My Grandmother Ruth with her Guide Dog Anna

Many people who have the gene do not have a known family history of vision loss.  I did.  So little was known in my family about this that I didn't even connect the dots that it was something that should concern us.  Everyone thought the reason for my grandmother blindness was completely unrelated to the cause for two of her sons going blind in adulthood.

On June 26, 1957 my grandmother graduated from the Guide Dog Foundation for the Blind. A newspaper story from the time say she was the first graduate from NH.  I don't know if that was correct but  she was definitely one the earliest.  Its quite a thing when have a daughter who has become interested in guide dogs a lot recently.

a snippet from a a news story.

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Guide Dog Foundation - http://www.guidedog.org

LHON.org - http://www.lhon.org/

Mobility Abby Style

One of the biggest challenges with helping Abby adjusting to her vision loss has been to teach her to be safe.  Abby benefits greatly with still has what seems to be pretty functional peripheral vision,  Abby has always been my risk taker.  She is always willing to try anything once.  Sometimes thats not a good mix for a 7 year old.

using cane on sidewalk

using cane on stairs

Its not a bad thing ether its just about the balance. Thankfully Abby is getting orientation and mobility training.   As with all her vision loss related instruction she fights.    We show up today knowing she is there to work and really tries to push the limits.  She isn't horrible she just tries to touch everything she can get her hands on and doesn't listen.  One thing I have learned is to walk away.  I leave her.  I love watching her orientation and mobility training but she does better when I'm not there.  

Abby does do well with the cane. I notice she will use it when she feels she needs it.  Sometimes she NEEDS it more times then other times.  Its a process and I know that its going to be another tool to help her be successful.  A cane is not a sign of disability but a sign of independence. 

Abby just looking cute with the cane

My Girl.

So much has changed the last few months but she is still the same feisty lovable girl she was before.  Abby's vision issues added an extra layer to many parts of her life but much hasn't really changed.   She still has a bit of temper.  She can be really sweet.  She is a good friend.   She loves to dress up and be girly. She loves to watch TV (she now just watches it with her nose an inch from the screen). 

I really think less has changed for her then it has changed for us.  Abby has never stopped just living life.  Her concerns have less to do with her vision and more to do with her friends at school.  

She is still just a little girl and my goal is not to get that lost when I am focusing on vision. 

Childhood Joy

As I said yesterday. Abby will soon forget "the worst birthday ever".  We finally had her birthday meal out and she had a great time.

Abby isn't a visually impaired child first. She is first a child.  A little adventurous, a little crazy, loving 7 year old child. She still thinks she is princess (and isn't afraid to tell you).   She still fights with her brother. While at times I look at how much of our lives have changed I realized that many things are still the same.

Worst Birthday EVER!!

Abby turned 7 this past weekend. We had a full weekend planned with lots of excitement.  Most of the weekend had to be scrapped though because Abby became ill.  She told me a few times that this was the "Worst Birthday Ever".  She really loves to be a little over dramatic but she really did not enjoy herself one bit.

It  just broke my heart. You can't plan when you are going to end up unwell.  It was just sad that for all the weekends during the year Abby's birthday weekend was the one that she had to not feel so good. 

She will forgot with time how horrible it all was. I have a VERY special outing planned in a few weeks for her birthday and we still have her birthday dinner coming up.

I can't help but think of her birthday last year. She had a party with lot of school friends.  It was a great time.  (we always do parties every other year and plan a special outing on the 'off' year) Last year she had normal vision. She didn't have the cares she does now. Her life was just more simple.

So looking back perhaps this birthday was the worst for it was the first birthday since the vision loss.

I am so proud being Abby's mother it doesn't mean my heart still doesn't break.

The best things in life are free*.

(well free is the wrong word. Someone is paying for these great programs. THANK YOU)

I have recently found some great programs that encourage Braille literacy.  

Abby has struggled learning a skill her classmates  aren't learning. Programs like this are such motivators. 

1. NFB Reading Pals Program. Its a program that enrages early braille literacy for ages 7 and under. 

http://www.nfb.org/nfb/Braille_Reading_Pals_-_Early_Literacy_Program.asp

My daughter got so exited to have a little 'pal' to read Braille with. 

2. ReadBooks from the National Braille Press for birth to age 7

http://www.nbp.org/ic/nbp/programs/readbooks/readbooks.html

The bag was amazing.  It was stuffed with goodies. For the child and parent. She is going to use the bag that it came with to keep her Braille books in it and bring them back and forth between school.   The NBP is also a great resource for buying braille books.  They do a beautiful job.  The books are also reasonably priced.

3. Seedlings Book Angel Program. 

You can register to get 2 Braille books a year for your child. 

http://www.seedlings.org/bkangel2009.php

Seedlings is also another resource for getting inexpensive Braille books.

More programs..
http://www.wonderbaby.org/articles/braille-resources.html

Molly needs a cane too.

Abby loves American Girl dolls. She currently has 5. Now mind you I said currently and she does have a birthday in a few weeks.

When I realized Abby was going to be getting a cane I started a search for an American Girl white cane. I couldn't find any at all.  Not directly from American Girl or on the secondary market. I got conflicting reports that American Girl used to have a cane many years. I really wanted Abby to have one.   I realized that it wouln't be that hard to make one.  So I made two.

 Doesn't she look happy?  Abby loves them. It was great to make for something special  for Abby.  It only cost a few dollars for each one. To make your own  you only have to do the following:

• Wooden dowel of appropriate size. I was able to buy a pack of six for only .98
• black and red electrical tape
• white craft paint 
• a paint brush
• cord of black fabric (i actually got mine from a gift bag)

It only took me a few minutes after the paint dried to apply the tape. I just taped the cord to the stick and wrapping it down to what seemed to be the appropriate length and then applied two rows of red tape at the bottom.