Sunday, September 23, 2012

A letter to myself two years ago.

Two years ago today Abby had an 'emergency' MRI after her third visit with an ophthalmologist trying to figure out what was going on with Abby's vision.  I wish I could have told myself then what i know now....
These two kids smiling tell the story. alt text; a boy and a girl  smiling in a apple orchard
Dear Penny

You had a rough day today.  I know it was hard to see your 6 year old go through all that. It took them a long time to get Abby to stop moving in the MRI.  The more drugs they gave her to relax the more she fought. You will see this is just who she is ... a fighter.  I know today you were concerned they would find a brain tumor.  Remember saying over and over again that you hope they don't find anything. In a few days the official results will be they didn't find anything.  Abby didn't have a brain tumor.  It was a good day.

It will be a few weeks till you  get paperwork from Abby's ophthalmologist  appointment yesterday for Abby's school but when you do it will say Abby's vision is worse than 20/500.   She isn't faking it like some doctors thought ether. She is legally blind.  BLIND. You can't even say blind right now. The day you start to say blind without gagging is the day you start to help Abby become proud of who she is.

Abby is  strong girl who went months with out telling anyone she was having a hard time seeing things. You really don't know how poor her eye sight yet is but the good thing is it isn't going to get any worse than it is today. She isn't going to like answering questions about what she can see and what she can't see just understand she sees differently now.

Abby vision loss is caused by LHON (Leber's hereditary optic neuropathy) Abby will get officially diagnosed in about a month from now and you will find she will be one of the lucky ones it only took that long.You are going to have a lot of mommy guilt soon.  LHON is a mitochondrial condition.  She got 'it' from you. It will take you a little while to realize it not your fault she is blind. Its not your fault your son could become blind some day. Sam and Abby are two of the best things that ever happened to you so why should you feel guilty about bringing them into this world.  The world is better with them in it.   Blindness doesn't have to be a big deal you will find Abby being blind isn't the biggest problem is what everyone else thinks or doesn't think of blindness that's the problem.

You are going to walk around like a zombie for the next two months but it will get better. There will be a day in November when you realize your daughter needs and feeling sorry for yourself doesn't help her at all. Abby spends very little time feeling sorry for herself so why should you. You will go through you head with all the ideas on what you THINK Abby has lost but you will realize that most of what you think of blindness and vision loss isn't even true.

The idea of Braille sounds really scary today doesn't it? In a few weeks Braille will be recommend for Abby and you are going to freak out. Abby can't see text. She needs to learn braille and guess what YOU can help her. Braille is really isn't as scary as it seems. Its not the big deal you will think it is.  You are going to feel overwhelmed but you will learn braille is NOT hard.  Abby is going to learn to read. She is going to like reading and is going to enjoy books.

You are going to find a great 'family' for Abby in the National Federation of the Blind.  You will get involved for Abby at first but your involvement is going to help you heal and you will find amazing friends.    You are going to feel at first you don't belong.  Relax they are going to embrace you and Abby.

One big thing not to forget is about Sam.  He is going to love it when you do things just with him.  He is a good kid and one of the few people who never treated Abby any differently when she becames blind.

People are going to treat your daughter differently. You know in your heart your daughter isn't broken but people are going to keep seeing the sad little blind girl. Your job is to help your daughter grow into the confident person you know she is. If these dumb people  are really paying attention they are going to see a vibrant kid who refuses to let her blindness hold her back.  You may want to also try to educate Chris on the Americans with Disability act more than I did.  There will be this incident that happens at a museum that will show you world is not all rainbows and unicorns for blind people.

I have so much I could say and so much I could teach you but you will get where I am in time.  The good thing in the next two years you are going to make more good choices than bad ones and really its going to get better.... a LOT better.
Abby loves to read now. alt text: girl reading a Braille book looking up. 

Friday, September 14, 2012

Homework Help: Homework tool kit for our blind child

I have been wanting to do this blog for while.  I think its a great time to do it now because the school year has started in most areas of the country.

The past two years we have collected items to make doing homework just a little bit easier. Some of the items are necessary while others items are tools that just make things easier.

What things do YOU have in your homework tool kit?

Wonder what Abby has at home to help  her homework assignments?  
a lot of Abby's homework items (alt text: foam shapes in a plastic bin, a piles of books, Perkins brailler, Sensational blackboard, abacus, braille rules, and other items)

1. Perkins Brailler.  This is used to do all kinds of her assignments 
alt text: perkins brailler with foam stickers. Foam stickers are cool.
2. Sensational Blackboard which a a great tool for tactile graphics

alt text: a sensational blackboard 
3. Cranmer Abacus an essential tool for solving math problems.
alt text: cranmer abacus
4. Braille contractions reference books.  These are great and Abby and I have found them very useful.  We have two.  A Braille Spelling Dictionary & A Handbook of Braille Contractions
alt text: two white braille reference books
5. Age appropriate recreational braille reading material. Abby is assigned to read every night as part of her homework. Having things that is at her reading level is very important.
alt text: a collection of children braille books
6. Foam shape stickers. this can be very useful in doing math assignments. We have collected different shapes because sometimes the tactile graphics in her math book are lacking sometimes. That and foam stickers are just cool.
alt text: a collection of different shapes of foam stickers. 
7. a tactile dice.  Abby had an assingment that she needed a dice and this is what we bought for the next time we need one.

8. Braille rulers.  They are both in inches and centimeters NEEDED for many math assignments.
alt text: a collections of braille rulers. Some are white and others are black 
9. Wikki Stix & Bendaroos i have found that using a quality brand really matters.
alt text: a collections bendaroos in different colors.

10.  other items

  • slate & stylus  a easy way to write braille
  • 20/20 pen -its a dark black marker
  • puff paint - a simply way to make tactile graphics

What are some tools that you use?  Share we would love to hear what works for you. 

Saturday, September 1, 2012

sharing a blog

Slate and Stylish is a great blog about blindness from the adult perspective.

She is a great blogger.  She also likes shoes.

I am linking to her newest blog called "Faking it"