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.