Fun and Motion

Abby has always been an active child. She was an early walker. She has always loved the out side and  just loves to keep moving.  This didn't stop when Abby become blind.   Abby actually learned to ride a bike without training wheels the summer she was losing her sight. (we had no idea at the time).  That's just how Abby's rolls.  This past few months have busy and  very active for Abby. Her dad has a lot to do with that. She is a lucky girl. I realized an important truth when it comes to Abby and activities. Only SHE know what she can or can't do. Sometimes she just needs to try. Here are some of the highlights of some her her favorite things the last 6 months.

This past summer she started kayaking. She loves it. She is a great partner for her dad.  I am sure in the not so distant future she will be ready for a kayak of her own.

Abby also played soccer this year with our local recreation department.  She did have times when she got nervous on the field when she couldn't see her team mates and lost track of the game. She did  love being part of a team.  She was great soccer player before she was blind and it was wonderful to see that while she couldn't see the ball she could still do pretty awesome   

Abby on the soccer field

Abby also ran her first 5k this fall with her dad in October.  It was a great first running experience and I am sure she will do it again. I hope to get a chance to do my 5k this year and I hope Abby joins me.

Abby right after her first 5k

 Abby has loved ice skating since she was 4. Ice Skating isn't an activity she has much issues doing at all unless she is in a big group. Last year there was no good outside ice skating weather at all.  This year she was able to go out a few times.

Abby ice skating

 A few weeks ago she went skiing for the very first time and LOVED it. She just has that personality where she loves to try new things.  The instructors at the ski area said she was a very fast learner. She is going skiing her her dad today. She has the bug. 

Abby skiing. 

 Abby has started to do after school activities.  She did Jump Rope Club this year. She has done it before and she enjoyed it. Its just a few weeks long but its lots of fun. She also joined her school dance crew.She worked so hard and they just had their first dance performance last week and she did great. She did a great job.  There was in a large group on the stage and she did wonderful. She did  great with all the moves.  I was able to find a clip that didn't include the other kids. Its posted it below. 

Hooray for Braille: Braille Challenge 2013

Abby  participated on Saturday March 2nd in the 2013 New England Regional Braille Challenge that took place at the Carroll Center for the Blind in Newton Ma.

Abby giggling at the Braille Challenge

The Braille Challenge is a national competition of school age children (grades 1-12) that tests the areas of  reading, writing and spelling of braille. There is regional competitions all over the country and in July the final event that includes all the finalist in the country. (ie the best of the best)  It is run by the Braille Institute.
To find out more information http://www.brailleinstitute.org/Services/The_Braille_Challenge

Abby in one of the test rooms 

This was Abby's first year competing,  Abby and I have been practicing for a few weeks.  There is sample questions available and her TVI embossed them in paper for us.  We also went over the rules so she could be as prepared as possible. Abby competed  at the apprentice level this year. This year our goal was for her to get her feet wet so she could be even more prepared for next year. I couldn't go with her because I just had surgery.This was really hard for me but she got a special day for her and daddy.

Two more pictures of Abby in the room

When she was finished she was hard on her self and how she did but was still excited she was able to take part.   She said spelling was the easiest.   During the awards Abby was so excited to hear she got SECOND place in her division.  She was very proud.  It was so wonderful to be at any event that celebrates braille like this. I am so proud of Abby.  She has worked so hard these past few years.  Its really starting to pay off. Bravo Abby.  Happy Tears.

Abby getting second place in her division

Rare Disease Day 2013

Today February 28 2013 is Rare Disease Day.

What is Rare Disease Day?
"Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.  In 2013, it will be observed on February 28th. - See more at: http://rarediseaseday.us/about/#sthash.DxJBWpeA.dpuf"

What is a rare disease?
"In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. - See more at: http://rarediseaseday.us/about/#sthash.DYAKLC45.dpuf"

http://rarediseaseday.us/about/

People with rare disease feel isolated and alone.  Even medical professional may not be aware of the disease. There is less research in rare disease because less people are affected by them.    

Abby is affected by a rare disease.  She is affected by Leber hereditary optic neuropathy  (LHON).   LHON is a mitochondrial disease. Its a disease passed on  by a mother to all her children.   Our families mitochondria is mutated.  We have the 11778 LHON mutation. Everyone that is in my mitochondrial line share this mutation. My mother, sisters, nephews, son, daughter, .......  Not everyone who  has the mutation will become blind or affected. It just sits there like  a switch that may or  may not be turned on. My son Sam statistiically has a 50% chance of becoming affected in his life time. 

Abby looking through a bunch of pumpkins that are the same. 

LHON generally affects men in their teens and early 20s but it can affect anyone with the mutation at age and sex.  It generally affects ones central vision different people affected by LHON experience all different levels of vision. 

So today think about those 1000s of rare diseases out there and the people affected in many different ways. You may be surprised how many people you know affected by a rare disease. 

To find out more about about Rare Disease Day

http://www.rarediseaseday.org  and  http://rarediseaseday.us/

To find out more about rare diseases. 

http://www.rarediseases.org/

To find out more about LHON

http://lhon.org/

https://sites.google.com/site/planetleeder/lhon

Are you a family affected by LHON  Check out the group on Facebook 

https://www.facebook.com/groups/29805437752/

I am blessed....

Some days its hard to see  but I am truly one of the luckiest people in this whole world.  I have two smart, sweet, amazing kids.  I am so very proud of them both and I am so glad I get to be their Mommy. 

Abby & Sam alt text: two cute adorable kids laying on the floor 

Liebster Award

I was given the "Liebster Award" from Mixed Nuts  What is the Liebster Award?  Its simply a way to honor and recognize other bloggers. Its generally where bloggers with less than a few hundred followers give a lift to others bloggers like them..

alt text: Abby wearing a panda hat and looking cute

The Rules of the Liebster Award is simple.

The rules for the acceptance are:

1) Visit and thank the blogger who nominated you
2) Acknowledge that blogger on your blog and link back
3) Answer the 10 questions posed by the blogger who nominated you
4 ) Select 3 – 5 bloggers for the award
5) Pose 10 new questions to the new nominees
6) Post the award on your blog

You can find my answers to Mixed Nuts Questions here :  http://visionfora.blogspot.com/2013/01/questions-answers.html

Here are the bloggers I give the award to.

I tried to pick some of my favorite bloggers who haven't already gotten the award before.

Peanut & Phouka's Adventures http://peanutandphouka.wordpress.com/

I love fierce moms.  Phouka is a fierce mom.  I noticed she was given the award from "Thomas Marshall does it all" but didn't post her response yet so I decided it was free to pick her.

My Little Rays of Sunshine http://jennohara-theblindspot.blogspot.com/

A great mommy blogger who is dealing with blindness with one of her chicks.  Oh and she is fierce too.

Without a Classroom http://withoutaclassroom.wordpress.com/

Natalie Shaheen is a wonderful teacher that is helping students across the country every single day. She is director of education at the NFB Jernigan Institute.  I mentioned fierce moms. She is a fierce teacher.

Slate & Stylish http://slateandstylish.blogspot.com/

Did i mention fierce before?  This woman is truly fierce. I will never have the sense of fashion or poise of Deja but a girl can dream right?  I hope with all my heart Abby will look at Deja as a great role model.

  * Honorable Mention  *

Thomas Marshall Does it All http://thomasmarshalldoesitall.blogspot.com/

I love this blog so much but she just got the award.  Check it out and watch Thomas Marshall Do it All

So my questions for the blogs I gave the award to are:

1. Why did you start blogging?

2. What does blind mean to you?

3. What has been a hard experience you (or your child) has faced because of blindness?

4. What is your braille story? 

5. Who is an inspiration in your life?

6. What is your favorite book?

7. How many pairs of shoes do you have?
8. What is your greatest fear?
9. What is something most people don't know about you?
10. Describe your self in one sentence.

Questions & Answers

I was given the Liebster Award and here are my answers.

Here is my Liebster Blog :  http://visionfora.blogspot.com/2013/01/liebster-award.html

1. When you first got your child's diagnosis - what was your immediate reaction?

The process of find out  that Abby was blind and finding out what caused it was some of the darkest days of my life. I think i was in a fog for two months.    Abby was six years old and had just started first grade.  This should be one of the most exciting school years of her life and instead her world was put upside down. Than adding that we were are now aware that we had this rare genetic mitochondrial disease in our family it was really a complex layer to add.  This is hard to explain.  Abby is the one that is affected but LHON happened to my whole family.  My mother, sisters, myself and nephews all are aware we could be affected with LHON and blindness. Some say its like being born with a bomb (and there is even a book ) and I think that works. 

2. Why did you start blogging?

I felt alone.  At the time it was really hard to find any information about LHON and Abby is an outlier since it generally affects those who are male in their late teens and 20s more. There are very few children who are affected (or people who were affected as children).  I hoped to share what we went through to help others.  I also became aware with the complexity of the education of a blind child and wanted to help other parents who had blind / visually impaired children like my daughter.   I started this blog before Abby got diagnosed and you can see the first month of posts here: http://visionfora.blogspot.com/2010_10_01_archive.html

3. What is the best thing you have learned since your child was diagnosed?

That blindness wan't as scary as I thought. Our society sees becoming blind as one of the worst tings that can happen to you. That simply not true.  I had two choices when Abby became blind. I could sit around and feel sorry for ourselves or do everything I can to help Abby (and others). 

become that person she would have become regardless of blindness.   I went over a lot of that in my post http://visionfora.blogspot.com/2012/09/a-letter-to-myself-two-years-ago.html

Abby loves ice skating alt text girl wearing a panda hat is ice skating

4. What are you proudest of?

I am proud of both my children.  I am proud that Abby has adapted so well with becoming blind and that her brother has always been the one person who doesn't let her get away with anything because she is blind.  I am proud both my children are growing into such great kids. I am the luckiest Mommy in the world.  

My two kids alt text two kids smiling laying on the floor looking up

5. Do you have any regrets?

I wish I had known sooner that Abby was blind.  I don't know when the process started it very well could have started 6 months before we found out.  

6. What would you say to a new parent that just was told their child was blind/going blind?

This is hard because finding out your child is blind is a tramatic thig regardless when you find out. You are filled wiht all the misconceptions of our society.  I recall thinking my daughter life was over. I simply didn't understand how someone lived blind That its going to be ok.  As strange as it sounds embrace your child.... blindness and all. If you look at your child's blindness with shame and fear than they will to. 

7. How do you balance family life and life with a child with special needs?

The simple  answer is I don't.  I could work a lot harder at balancing my life. I have a hard time saying no. 

8. On a down day - what is your favorite activity?

I love just doing something fun with the kids.  Simple things. Like Shopping with Abby. Taking a walk with Sam.

9. What scares you the most?

I fear how other people will negativly affect my kids life.  A teacher who doesn't provide her with materials, classmates that fear including my daughter & a place that refuses to give her job because she is blind.   These things will happen.  All i can do is making Abby stronger.  

What happened with the musuem and Abby's cane is a good example of that. 

http://visionfora.blogspot.com/2012/08/cane-denied-when-good-policy-fails.html

10. Do you have a favorite motto or saying?

Blindness isn't an end its a start of a great journey for the whole family. 

Accessibility Matters in Schools

Imagine an elementary classroom. The teacher passes out a worksheet. When it gets to the blind student the child can't read the worksheet because its not in Braille. The teacher didn't get the assignment to the TVI (Teacher of Blind & Visually Impaired) in time.  The rest of the classroom starts working on the assignment perhaps together.  The blind student goes to a quiet part of the classroom with a paraprofessional and the para reads the worksheet to the student. The answers are given orally. The students misses out on much the assignment.  The student didn't get reading or writing practice.  They missed out on part of the classroom discussion because they were on the sidelines. The student doesn't feel part of the lesson.  The student didn't get the same education as his/her peers.  

Thankfully I can say this doesn't happen very often for Abby.  She has a great team. and almost all items for her are Braille. (there always seems to be some stray item).  Abby's classroom teacher, TVI, paraprofessional and case manager all know its very important for Abby to have assignment in accessible format. For Abby that is Braille. She simply can't see text at all.  Abby goes to a great school.

Abby reading a book in Braille (alt text: a girl is outside reading a book in braille)

Let me tell you another story.  

Let me take you back to the beginning of this school year.  Abby's class starts to prepare for state-wide testing for the first time.  The class breaks into groups and go over over a practice test. Abby has a practice test and hers in Braille.  She is able to be  an equal part of the group assignment because she could read and access to the the same materials as her classmates.  She comes home EXCITED for the big test to start. This is what happens when accessibly for all in a classroom WORKS.   

There is so many things that can make a blind child feel isolated in a classroom but it should never be because of inaccessible content. 

The National Federation of the Blind protested yesterday at Amazon's headquarters in Seattle WA.Why?  Amazon's Kindle content and hardware is inaccessible to the blind. Maybe you are asking yourself why should it matter? Amazon is private company. Maybe you are even thinking... while accessibly is a great thing and other companies like Apple have made its content and hardware accessible to the blind  Amazon does HAVE to. I completely understand that side of the argument  till you get to one very big point. As soon as you bring its inaccessible content and hardware to schools its just down right wrong.  Amazon has decide to make a big push to get inaccessible Kindle content and hardware into classrooms. These actions are encourage schools to break the law. 

Now imagine the classroom with inaccessible Kindle content and hardware.  Now look back at my first story.  Its the same tale only replacing the inaccessible worksheet with the inaccessible Kindle. No its worse. The blind student will also lose out on the  experience of using the cool gadget.  This isolating the blind student even more than before. Please find out more about the NFB protest and its important issues at https://nfb.org/kindle-books

A blog from the teachers point of view -Without a Classroom : Kindle Books For All : http://withoutaclassroom.wordpress.com/2012/12/12/kindle-books-for-all/

A video on the issue.  

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