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.