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.