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.