Homemade Tactile Drawing Board

I made Abby a tactile drawing board.  This is not an idea I made up myself. Actually parents and teachers have been making these for years.   I saw one at the NFB convention in July.   Its simple and Abby loves it.  Sometimes with kids its the simple things.

I realized a few days ago I had all the supplies at home to make one so it didn't cost me anything.  If I had to buy materials it wouldn't have cost that much money ether.  

All I used was

a piece of cardboard larger than a piece of paper (I used to because mine was thin)
Duct tape
screening (like window screening)
scissors (to cut the screening and cardboard)

I had this coated plastic screening already but the metal stuff would have worked great too and I still may do one using that kind of screening.  Different materials would give a different texture and impression.  Abby has used crayons, colored pencils and markers on hers already. She gets excited about how different they all work with it. (when you flip the paper over you can feel the picture on the other size)  You simply color/draw over the screening.  It doesn't just give a the user texture feel but it makes a sound when use it and it vibrates the writing instrument while in use.

I like being able to do things like this for my daughter.

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.

Uno Time..

Abby has taken a liking to playing Uno. A few weeks back I spent a day putting braille on a set o Uno cards.

Perkins Brailler with Uno cards

There are places you can buy Uno cards with braille already on them already but it was fun to add the braille myself.  Abby has really enjoyed playing Uno. She wants to play every single day and has beaten all of us at least once. Sam doesn't like playing with her because she always beats him.  She can actually see a lot of the cards because they are large and bold but she uses the braille when she is isn't sure. I am hoping to modify other games for Abby. She loves it.

Lemonade

Abby playing in a big puddle with her cane in the rain.

Have you ever heard "When life gives you lemons... make lemonade"  Abby has.  

I caught this moment a few days ago. It has been raining. I was I just picked the kids up from school and I was trying the hurry the kids to the car so we could get out the rain.  Abby had rain boots on and decided it was a good time to use them and splash around in the rain. I tried to get her to stop but she saw a moment she wasn't going to let pass.

Abby is like this a lot.  Through everything that has happened with her the past year she has remained remarkably upbeat.  

Yes she has had times when she has been down but all and all she is doing pretty well. She has kept up with math.  She is also slowly making progress with reading.  She is very motivated. It just takes time and progress. Losing ones vision is a traumatic experience.  Abby just wants to be a kid and doesn't really have time to waste feeling sorry for herself.  

She is still rides her bike. She rides mostly on closed roads and at the park but she is still riding. She learned to ride her bike without training wheels last summer. This was the same summer she slowly was losing her vision.  

Abby rinding her bike on a closed road

 So the next time it rains don't forget to play in the puddles. 

The Quest for role models.

One of the things I realized early on is that I need to help Abby find role models. People who are blind have done amazing things. There are also some sighted people that can inspire Abby too. Its about Abby seeing the opportunities in her life not the limitations.  They can be blind or sighted.  They can be famous, a family member, or just someone they meet that inspires them.  Abby was concerned about using a cane and being laughed at a few months ago. She met a blind peer who used a cane and she hasn't really had a problem with it since.  Thats the magic of role models.

Today we had the chance to learn about Fanny Crosby.  A very prolific hymn and poem writer. Who lived more then a hundred years ago. She was also blind.   Abby really seemed to understand and enjoy learning about Fanny.  What she was able to overcome and what she was able to do. We also got to meet a really nice high school senior who had a wonderful guide dog Otis.  She was so kind to Abby.  Went we first met her Otis was working but she took off his harness and brought him over to Abby so she could meet him.  Learning about Fanny and meeting this young woman were both so important to Abby.

Abby's world is opening up everyday of the things she is going to be able to do. She is realizing her challenges are not as big as she first thought. Nothing is going to hold Abby back.

Independence

Abby has always been independent. Since she was a very active toddler she has wanted to do everything herself.  I have always worked hard at trying to teach her how to be safe and no make crazy choices.  Sometimes that didn't go so well.

Breaking in the fridge

Doll and Girl   yogurt maska.

This trait caused  some many disagreements and MANY messes. (I have hundreds of these pictures. These crazy mad cap adventures STILL happen with Abby everyday.)

Abby does struggle at times doing things that used to be easier but thankfully she hasn't lost the desire to do to them.  I feel I have to let her do things herself or help her learn the steps to do them safely. Its a really hard thing to do.  I think this is true for all parents and children. 

Abby has taken a liking to oatmeal recently.  She wants to prepare it all by herself.   I help her still but I let her do most of it.  The only thing she really needs help right now with is the very hot water.  When challange comes up like using the microwave I find ways to help Abby do them herself. 

 I am working very hard letting Abby 'go' and do things more independently. To do the things that other kids do  I can't wrap her in bubble wrap. 

Yes that is Abby going up and getting to the top of  a climbing rock wall. She had to feel for each footing and hand rest.  I asked her and she didn't really see anything. She just kept going for it. I am so proud of her. If you watch the video she has some issues but she kept going. She didn't give up.  This is so much like Abby every single day.  She struggles but keeps going.  She has a problem with something she practices and goes for it.   This was Abby's second time on a rock climbing wall. The first was 15 minutes before this video was taken.  The first time she just went for it too.  

You can hear me cheering Abby along.  Actually you don't hear me until half way.  I waited till she needed it.  Abby is the one that is in control of this journey.  I can't make her independent. That is something Abby needs to do herself.  I am only in a supporting role.  Abby is the one that is living this.

It is hard on Abby that she needs some reliance on others due to her visual impairment. She fighting a bit of the help she gets at school but she knows right now she needs it because in a few years she won't need it at all.  Abby waits around for no one.

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.

----
about the "other Leber's" http://www.wonderbaby.org/articles/lca-faq.html

Abby's "Leber's"  http://www.lhon.org

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.

The Cane

Abby had her first Orientation and Mobility session today.   She now has a cane to use. I even had a chance to try out a cane and sighted guide techniques.    It was great for both of us.

It was hard earlier in the day to imagine her with a cane.   Sometimes its easy to 'forget' that Abby has a serious vision impairment. Now she has a loud flashy sign with her. A sign that shows the rest of the word she is just a little different.

The cane is much much more then that though.

The cane is a sign of  independence, a sign of safety and a sign that Abby will recover some of her lost self confidence.
The Cane... Its a good thing.

Talking Books

Abby is so excited. She got her Talking Book player from the National Library Service for the Blind and Physically Handicapped  (NLS) She is able to get 1000s of book in audio format for no cost at all. The player is even provided .  She gets the books ether sent to her by the mail from our state library or we can download many of them.

Abby got the newest type of machine. The digital advanced player. It plays digital cartridges and also plays books downloaded from the NLS's BARD website.  We are also able to download books from RFB&D which offers books and textbooks in audio format.

NLS digital player is perfect for a child with a visual impairment. It has big colorful buttons, (with braille labels) The cartridges are easy to change.  The speaker that is on it sounds great. . (we also attached earphones)   You can run the machine without having to see at all.  Amazing.

Adventures in Braille: A good day

Abby has been STRUGGLING with reading Braille.  She knows most of her letters but when it comes time to feel them she has been struggling a lot. She is having a hard time telling one letter from the next and when its come to feeling the letters her letter recognition was much lower then when she writes them with the Brailler.  It was making her become very unexcited about Braille. I had gotten some braille flash cards with just the letters on them and I first started having her practice with them.. Better It was less stressful but she seemed to loose interest quickly. She still seemed to struggle. A member from an online group of  parents of blind/visually impaired children gave me this amazing idea.

She recommend making a large tackle version of a braille cell with a 6 muffin baking pan and 6 tennis balls.

Now you can take away and add balls to represent different letters. Not only is it really easy for Abby to feel she can see it so she gets the reinforcement two different ways.

So with the flashcards we made up a game.  I would hand her a card.  If she could recognized the letter and recreate it in the pan she would get 3 points. If she didn't know the letter but could recreate it in the pan she would get a point. If she could recognize the letter once I fixed it for her in the pan she would get a point.  Abby is very completive. She breezed through all the card and did better then she ever has.  She had a smile on her face during the whole time. She now has a score to 'beat'.

(picture of Abby playing the game)

The new normal.

I have come here and started writing different posts many times over the past two weeks.  There is never a day I forgot about Abby's visual impairment.  I sometimes forget for little bits at time. When getting the kids ready for school Abby many times has lost a required item like a hat or a glove.  Its gets very frustrating  and my volume raises and I usually find my self pointing out to her. "ITS RIGHT THERE."  She will look at me confused and will say "Where? "  Then I usually feel really bad about even asking her.  

One of the biggest challenges is getting Abby to be more organized.  She has always been an unorganized child.  Its just part of who she is.  She needs to learn to put things in a proper places that easy to remember its location.  

There is no book you can buy to give you all the answers.  Believe me I have looked.  Keep looking for titles like "Your 6 old Daughter has lost her sight, Now What"   "Dealing with your child's visual loss" "Handbook to vision loss"   sigh... They don't even have books about blindness at all in the bookstore. 

Abby is doing great at times but she still  meets me after school with a sad face.  My beautiful social butterfly is heartbroken that  the drama of friendships at age 6 has gotten much more complicated.    She has some great friends but they really don't understand that Abby can't play tag or hide-and-go-seek. 

I know Abby is going to figure it out. I know she is going to do well its just breaks my heart the simple little things she has lost. 

Adventures in Christmas

I love Christmas. I have since before I could remember.  Its genetic my father loved Christmas.  This year was more different then any other. It wasn't bad it was just different. With new things all a little different.

The tree never really got its decorating finishing this year.(it was half decorated poor angel never made it on top)    We put our tree in three season sun room  (off our living room) and this year I really wanted it in the living room this year.   We decided to again put it in the sun room this year and see how its goes. (there is a lot of benefits to it being in the sun room) I felt the tree in the living room would be closer so Abby could enjoy it more.  (We are going to have it in the living room next year) Well its cold in the sun room. (one of the reasons we put it there a frozen Christmas Tree doesn't go  We never really finished it.  I realized on Christmas Eve it wasn't finished. 

Abby has recently joined the children choir.  Part of my plan to bring her music since she has lost so much of her vision.  On Christmas Eve she sang and it went very  but there was this one part where the children all went to sit with their parents when I realized my daughter was 'stuck' up front.  It all worked out but I was so scared she was upset. (she was fine)  I was so proud of her though.  I let her 'go'.  She was independent enough walk in with her group.  I am so proud.  Its just always something that apart of what she does. There isn't some  normal child activity  where I can drop her off with out going through her vision disability.  

We got back from church and decorated a gingerbread house and made cookies. Abby was so cute and she took a bunch of pictures during our gingerbread house build.  She actually didn't do that bad.  We had a great night.  I took note how much she enjoyed the tactile activity of building. (new tradition for sure) Then they were sent off to bed.  

Christmas morning was like most how Christmas morning is for most children.  The only exception being when she got up and ran to the tree She said "where are the presents?"  I had placed the presents in front of the sun room door hoping Abby could see them better that way and she honestly didn't see them at all till I pointed them out to her. It was kinda fun when Abby asked me (very innocently) if there was less presents this year.  There wasn't she couldn't see them all at once. It was funny because I thought I over did a bit this year.  So next year tree in the living room so Abby knows right were to look.   

I thought everything changed this year and really it was just like its always been...a wonderful family Christmas (with a few lessons learned)  I realize I didn't make much point in this blog post.  I wanted to write about our first Christmas since Abby lost her vision.  

Happy Holidays Everyone.  

Homework Struggles

Wow we struggled with Braille homework tonight.  She gets upset sometimes that everyone else doesn't have to do this work when she does.   She is learning so quickly though.  I am so proud of her.  Is amazing how much progress she makes in just a week.  

She has learned the whole Braille alphabet. She can write it and read it.  She has moved on to words and its a bit more of a struggle but she is learning quickly.  She is being introduced to Braille grade 2 . Braille grade 1 is the alphabet with the words spelled out with each letter.  Braille grade 2 uses contractions (shorter versions of words), like e is braille grade 2 for every.  

Its all a lot for Abby to take on but really she can handle it but like every child homework is not fun.  So mommy and Abby didn't' have a fun hour while we got through her assignment that should have taken her 20 minutes. 

She just likes to prove she is still very a much a normal 6 year old.

I am waiting.

I keep waiting for it to get easier.   Easier to watch Abby fall down a set of stairs in front of her school (very minor fall).  I keep waiting for my my heart to not sink when I realize Abby can't see me.  There are many times I forgot my daughter is visually impaired.  Then like a splash of cold water I am reminded.  Its always the same sad crushing feeling.

I love introducing my children to great art. Abby had her 6th birthday at a local art museum and it was a great party.  We also made a trip to another art museum in late spring were Abby loved sketching what she saw. It was so wonderful to watch her develop an appreciation of art. She noticed the details and the beauty.   Thats something that was taken from her.  Her ability to visually enjoy details.  It breaks me.

Abby enjoying art February and April of this year.

It will get easier right?