Thomas Marshall Does It All

We Moved! Find us at www.thomasmarshalldoesitall.com

noreply@blogger.com (Jessica Kovacs) — Sat, 08 Mar 2014 02:12:00 +0000

I moved the blog! Find us at www.thomasmarshalldoesitall.com

I thought it was set up to re-direct everyone but I hear people who follow via email thought I just stopped blogging. That's not going to happen any time soon!

Follow the new blog by going to the Tom's Blog page and clicking on the blue subscribe button on the right hand side of the page.

I think you will like the change. It is easier to comment on the new blog and the information is organized nicely. See you on www.thomasmarshalldoesitall.com! I've missed you blog subscribers/followers.

Music Together, again!

noreply@blogger.com (Jessica Kovacs) — Wed, 05 Feb 2014 02:45:00 +0000

Tom is taking Music Together classes again. That's right, every Saturday his Dad and I sit in a circle, dance, sing, and clap. This is a bit of a stretch for me, but I do it because I love him.

You should see Tommy in class. He absolutely hums with excitement. He can't wait for class every week. He's always asking to go see Karen, his Music Together teacher.

We never miss a class if we can help it. I just can't do it to him! He loves it too much. Check him out singing several Music Together songs in the video below.

Music Together is a little different from other music classes. There is no performance and the children are encouraged to enjoy the music and participate in whatever way they feel comfortable. There is no pressure.

You sit in a circle with your child and a teacher leads the group in song. Sometimes small instruments are brought out to play with, sometimes we dance around, and sometimes we swirl scarves through the air. It is really a great way for young children to learn to enjoy music.

As a blind child, I feel that Tommy has an advantage in this class. He pays attention to music so intently. He is never off key and never off rhythm. I sometimes daydream and have to look around to watch the group to get back in rhythm. Tommy never does. He is 100% focused on the music. Every class is like Superbowl Sunday for him! He is all business and he absolutely loves it.

It can be hard when you child is young and has special needs. I wanted so badly to find ways to get out in the community and mix with other kids and parents, but I was scared. I hated the feeling of judgement and the questioning looks Tom always got. These classes are a great environment for kids with special needs. His teacher is accommodating, but the class in general has a no pressure, relaxed vibe that I love. No one is asking about milestones or showing off :) It is just about enjoying music.

From the Music Together site -

Music Together is an internationally recognized early childhood music and movement program for children from birth through age 7—and the grownups who love them™. First offered to the public in 1987, it pioneered the concept of a research-based, developmentally appropriate early childhood music curriculum that strongly emphasizes and facilitates adult involvement.

Music Together classes are based on the recognition that all children are musical. All children can learn to sing in tune, keep a beat, and participate with confidence in the music of our culture, provided that their early environment supports such learning.

What is People First Language?

noreply@blogger.com (Jessica Kovacs) — Mon, 03 Feb 2014 16:29:00 +0000

What sounds better to you?

Accessible parking or handicap parking?

Disabled children or children with disabilities?

A child having fun!

It may seem small, but it makes a difference. Put the person first, that's the point of people first language.

Labeling people is unhealthy and distances us from each other. It points out how we are different instead of starting with how we are all like. Notice how you see people pointed out in the news. Is it a story about a child with cystic fibrosis or a cystic fibrosis child? One sounds wrong, doesn't it? It doesn't feel right.

2014 is still just beginning. Let's make an effort to use people first language just because it is important to treat people well. Isn't that a good enough reason?

My son is a child first, and blind second.

Learn more at Disability is Natural or check out this great list of person first comparisons.

Writing His Own Story

noreply@blogger.com (Jessica Kovacs) — Wed, 29 Jan 2014 14:30:00 +0000

Tommy is writing his own story. I get so tired of the comments I get about Tommy's blindness. I don't need to hear all the negativity and neither does Tom. Especially Tom! He is a happy child who is living his life the only way he knows how.

You never know what life has is store, but we only get one life to live. You have to use what you were given and go for it. That's what we intend to do.

Too Much Winter

noreply@blogger.com (Jessica Kovacs) — Wed, 29 Jan 2014 03:23:00 +0000

If it's going to be this cold we might as well look good, right?

Tom ready for school on a winter day, wearing his knitted mohawk hat with skulls.

I don't know where you are, but it is crazy cold here in Pittsburgh. And I mean CRAZY cold. School was cancelled today and will be cancelled tomorrow too. It's just too cold to send kids to school and have them waiting for a bus outside.

Now I drive Tom to school but still, I hate to take him out in this. His school has residential students so it never really closes. I took Tom into school today but even being out a little bit gave him wind burn on his cheeks. We might both be home tomorrow. It is just too cold out!

Hope you are snuggled up and cozy wherever you are!

And by the way- I read Tommy a Little Golden Book from my childhood tonight, "Scuffy the Tugboat." He was not impressed. He was sound asleep only three pages in. Maybe I'll try again tomorrow.

Tom posing in his fancy winter hat and scarf.

Quora help - What is it like to be deaf, blind.....

noreply@blogger.com (Jessica Kovacs) — Tue, 28 Jan 2014 23:48:00 +0000

On Quora someone posts a question and then people reply and those replies can be up or down voted. It is a very interesting site.

Could you help me out with this Quora question?

What does It feel to be deaf, blind, or physiologically mute?

I got into a big discussion on here with someone who insists on feeling bad for people with disabilities. Apparently, I am arrogant to deny his sadness! I only want him to know that he should keep his sadness to himself because my son doesn't need his pity. It is not helpful or constructive.

Check out the comments and add your own answers.

We need real discussion with the greater public who don't know much about blindness or other disabilities. Help educate them and learn to see the world from another perspective!

First Trip to the Barber

noreply@blogger.com (Jessica Kovacs) — Fri, 24 Jan 2014 14:54:00 +0000

Late last month Tommy's hair was getting wild. Sometimes my husband and I attempt to trim Tom's hair, but we usually make a bit of a mess of it. We have our talents but haircutting is not one of them!

Tom's usually goes to a hairdresser near my parents' house who is super gentle and patient with kids. Well the usual hairdresser was closed due to the holidays so Tom's Dad decided to take him for his first manly haircut at a local barber shop.

Being a woman, I had no idea how barber shops work. I guess you just show up and wait your turn. You may be first in line or you may be fifth; it's a matter of chance. Well that's a challenge for a child and we weren't sure how Tom would handle the wait in a tiny barber shop. A doctor's office expects kids and their antics, but a barber show might not be as accommodating to kids with meltdowns.

Tom getting his first haircut at the barber shop.

Tom's Dad called in to see when the shop opened and tried to feel out the guy to see how accommodating he would be. The man was very nice, but basically he said you just have to come down and give it a try. Very true! So they did and it was a great experience. Look at the smile on Tom's face!

Tom and his new friend, Gary the barber.

There was only one person ahead to Tommy when they got to the Barber shop. As Tommy waited he was listening intently to what was going on in the shop. He heard the buzzing of the clippers and was saying, "bzzzzz, haircut, bzzzzzz, haircut." Then he heard the barber washing off a tool and assumed he was washing his hands. Tom heard the water and yelled out, "Washing hands, better use soap!" The guys at the barber shop thought that was pretty funny.

All in all, it seemed like a wonderful father and son trip to the barber shop!

Tommy getting a haircut.

Questions & Answers 2014

noreply@blogger.com (Jessica Kovacs) — Wed, 22 Jan 2014 02:43:00 +0000

People always have questions about Tommy. Well, this is your chance to ask a question and I'll answer it. I'll start by answering some common questions I get about Tommy.

Why is Tommy blind?
The simple answer is because that's the way he was made. Tommy was born with bilateral (both eyes) retinal detachments due to a condition called Persistent Fetal Vasculature Syndrome. His eyes just did not form correctly. As soon as he was born the doctors knew that Tommy was something special and they began testing and prodding away. We jumped head first into parenting and special needs on day one.

Will Tommy learn Braille?
Yes. Tommy is already learning pre-Braille skills and being exposed to Braille at school and at home. Just as a sighted child would encounter text in their everyday life, a blind child should encounter Braille. We have labels all over the house and tons of Braille books.

Texture matching puzzles are a great pre-Braille activity.

Tommy is one of the lucky ones. Today less than 10% of blind people are learning Braille. It is expensive to teach Braille. Some schools and some parents fight against teaching it, and would rather have children use audio-books and big print.

But let me tell you, I have never heard someone regret learning Braille, while I have read many accounts of people regretting they did not learn Braille. For someone like Tommy, who only has a bit of light perception, Braille is his only option for literacy. And if you can't spell or write then you are not literate! So bring on the Braille.

How do you stay so positive?
Because I am generally a positive person. A little sarcastic, but still mostly positive. And because our life is not a tragedy. Sure, we have more to deal with than some people, but everyone has something going on if you look deep enough. We all have our challenges. Tom has different challenges due to his blindness, but he also has many unique opportunities BECAUSE of his blindness. He goes to a fabulous preschool at our local school for blind children. I could not hope to afford one that awesome!

Why do you blog?
I blog because people still meet Tommy and feel sad when they look at him. All they can see is his blindness and not the happy child right in front of them. Sometimes sighted people are burdened by their sight. We can't get past our own viewpoint to see that plenty of blind people are perfectly happy. They are not broken sighted people.

Maybe someone that has gone blind might have that feeling, but Tommy never had sight so he does not miss it. And I have seen and met children who have lost their sight who have adjusted to their blindness very well. So here I am, blogging for Tommy until he is old enough to tell you himself.

You never know where you will find Tommy hiding. But he loves slamming doors which is a good giveaway.

How does Tommy get around?
Very well! He just goes and does what he wants to do. Since he began walking we have been telling him to put his bumpers up. He walks with his hands out a bit to feel for obstacles or walls. We have visual preview and he has tactile preview. A long white can is just another way to preview what is coming up. He also notes the change in flooring for orientation and pays attention to the different sounds different types of flooring makes. When we are somewhere new he almost always reaches down to pat the floor and always takes notice of when flooring transitions from carpet to wood or vice versa.

He has free reign of the house and goes up and down the stairs on his own. We try very hard to treat Tommy as we would treat any four-year-old. It can be hard as a parent but it is the best way. He can't grow up thinking he is made of glass. We wrestle and play. Tommy got a Power Wheels quad this summer and we run around the yard chasing after him when he rides it. Hey, it's good exercise for us!

Any more questions? Leave them in a comment and I'll answer them in a post.

What's that? 200,000 Views!

noreply@blogger.com (Jessica Kovacs) — Mon, 13 Jan 2014 15:08:00 +0000

Tommy cheering on our 200,000 page view!

That's right! Thomas Marshall Does It All just reached its 200,000th page view. Thanks for visiting my blog and keeping with with Tommy. I love sharing his experiences and everyday details with you.

What's Tommy Into?

noreply@blogger.com (Jessica Kovacs) — Mon, 13 Jan 2014 02:13:00 +0000

Sometimes people ask me interesting questions when I tell them my son is blind. Recently, someone asked me, "What's he into?"

Tom and his gross dog toy. It farts and he thinks that is wonderful!

That question really got me thinking because that's not the usual follow-up question that most people have. Usually people ask me if he was born blind, or they don't know what to say and they look uncomfortable. I usually follow up with, "He's fine! He's a happy little guy in preschool." And he is!

"What's he into?" got me thinking. At the time I said music and movement. That is true, but in general I think Tom is into people, music, and experiences. He latches onto people and experiences and talks about them long after. In November we drove to Virginia and saw my brother and his family, and my aunt and uncle, and Tom has been talking about them since. You would think he saw these people every day!

This summer he talked about his aides and his teacher from school. You could tell that he just couldn't wait to see them again! He has a terrific memory. If your child is blind, do they have a similar memory for experiences and people?

Tom had a great time during the holidays and I know it was because of all the family and friends we saw. He didn't talk about his toys, he talked about the people we met and the songs he heard. Tonight he asked to listen to Joy to the World and Silent Night.

Tom does experience things differently from sighted children. Sure, I can sometimes get sad about the holiday spectacle that Tom missed, but I think Tom helps me see things that I miss. He helps me focus on people and experiences. Does it really matter how great everything looks for the holidays? Not to Tommy. He focuses on the holiday experience. I think that is a good thing for all of us to remember.

We took a little blogging break but now we are back. I hope you all had a great holiday and wish everyone a happy New Year!

Argus II: How It Looks

noreply@blogger.com (Jessica Kovacs) — Sat, 28 Dec 2013 20:06:00 +0000

Hey Everyone!

I found this incredible link on Reddit that shows what the Argus II Retinal implant actually does. Take a look.

Argus II Simulation

Pretty darn cool, right?

More from the Holiday Program

noreply@blogger.com (Jessica Kovacs) — Thu, 19 Dec 2013 17:36:00 +0000

Here's Tommy all dressed up for the Holiday Program last week. He wouldn't wear the hat but he looks quite festive in his scarf. His hand is under his neck because he does this any time someone asks him to hold his head up. He is quite literal!

The kids file in for their songs.

Dr. Seuss' The Grinch Stole Christmas

Adorable sugar plums

The twelve days of Christmas.

Rudolph the Red-Nosed Reindeer

And here's the video of Tommy's class singing their songs. Just in case you missed it!

You can hear Tommy really clearly in Silver Bells.

WPSBC's Holiday Program 2013

noreply@blogger.com (Jessica Kovacs) — Fri, 13 Dec 2013 18:10:00 +0000

This year WPSBC's Early Childhood Department performed "The Colors of the Season." Each classroom decides on their own program and the children start practicing around Thanksgiving. I am always blow away by the love and care that go into producing these shows. Every child is treated like a star!

Here's Tommy's class singing Silver Bells and Jingle Bells.

And here's Tommy practicing Silver Bells at home last week. He can really belt out a song!

How to Decorate for Christmas

noreply@blogger.com (Jessica Kovacs) — Thu, 12 Dec 2013 02:39:00 +0000

First you have to check out the tree skirt. And by that I mean hide under it and have some fun. That's what tree skirts are for!

Then you find all the musical holiday toys we hid away last year. Oh joy! They still work. Is it just me, or are they louder this year?

All the musical toys can sing at once if you are fast. We have a reindeer, a Santa and an elf that are still working. Why are these cheap stuffed musical toys better quality than more pricey toys? Oh well. Tommy loves them!

This picture also shows a new development - Tom is wearing a Santa hat! Tom has never allowed a hat on his head before. I can get him to wear a hood when it's REALLY cold but that's it. This year Christmas means something to him. Concepts like holidays are a big deal and that fact that he's on board with Christmas this year is huge!

Now it's time to decorate the tree. Bring out all the ornaments and touch them all. Maybe taste some too before anyone notices?

We have lots of unbreakable (plastic or fabric) ornaments so Tom can feel free to handle them. We put the breakable ornaments at the top or the back, or we don't put them on at all! Tom likes to dance and sometimes he dances right into the tree. Better safe than sorry with sentimental ornaments.

Tom found one more musical christmas decoration. We have a ceramic bell that plays Joy to the World when opened. Musical items are the best.

We have had lots of music around the house as Tom practices for his holiday program at school this Friday. His school really knows how to put on a show and they get every child involved. No one is left behind! I am really looking forward to this year's show now that I know what to expect.

But back to decorating! Scents is almost as good as sound. We have a couple of scented ornaments he made last year in preschool that still smell of cinnamon. Maybe this weekend we will get around to making some at home? Or maybe I could find a peppermint recipe for ornament dough? That would be festive.

This guy is tired from all that holiday decorating. Time for a nap! Enjoy your holiday decorating.

Great Toys for Blind Children - Holiday 2013

noreply@blogger.com (Jessica Kovacs) — Tue, 10 Dec 2013 15:37:00 +0000

Here's the list!

Great Toys for Young Blind Children Holiday 2013

I get lots of questions about what toys and gifts we are buying for Tommy. I updated my Amazon wish list and I described some toys we already have down below.

But don't forget that Braille books always make a great gift! Check out my Braille book resources - some are free!

So what's Tom playing with in the picture below? He's playing with one of those stuffed toys that play a song if you squeeze the paw. He LOVES those. We have one for almost every holiday and he plays with them until they break.

Great Gifts for Blind Children Holiday 2013

Stocking Stuffer Ideas:

wiki sticks
play dough
harmonica or small tambourine
whistles
foam stickers
candy - and for Tommy that means gummies!
small braille book
light spinner toy- Tom loves these even though he has minimal light perception. I think he loves the vibration.

Guidecraft's 3D Feel & Find

I bought Guidecraft's 3D Feel & Find a couple years ago and only now is it appropriate for Tom. He still puts everything in his mouth and only now am I ready to trust him with this toy. I do think it's a really cool little puzzle toy. These figures would be good to use in messy play in a box of rice or pasta.

Collector's Edition Sesame Street Music Player with Storybook with Great Grandma Dee.

The Music Player is a great toy that has 4 music cds. It's hard for a child (or an adult) to get the tiny cds in the player right but the buttons are very simple. Tom loves this! You will find it in the book section because the CD player is attached to a large book filled with the lyrics to the songs.

Music Together Class

This is Tommy's big gift this year. We signed him up for Music Together classes again. He loved these classes. Your are involved in music so that means singing, dancing, and playing small instruments. By the last class of his first set of classes Tommy was a pro. I can't wait to see what he thinks of Music Together one year later.

Playing Bop-it!with Dad.

There's a reason that Bop-it! is a classic! We play it together with Tommy because he's not fast enough to keep up. He loves to play it with us though and it's a toy he will grow into.

Great Toys for Young Blind Children Holiday 2013

Interview with Low Vision Bureau Podcast

noreply@blogger.com (Jessica Kovacs) — Mon, 09 Dec 2013 15:07:00 +0000

A couple weeks ago I had an interview with Alvaro from the Low Vision Bureau Show/Podcast. Alvaro runs a podcast about low vision and blindness that aims to raise awareness and share information among the community.

Check out my interview on the LVB Podcast Below.

Here are some links to recent LVB Podcasts.

Jessica from Thomas Marshall Does It All Blog.

College student with RP

Mark Nallia on using Android phone & iPad tablets with low vision/blindness.

Coming Soon to the LVB Show/Podcast
Don't miss these upcoming podcasts! These are going to be good.

Interview with a legally blind family.
The Developers behind powerful voice controlled apps for the iPhone
Albert Rizzi, the blind man who had an incident with US Airways last month because of his guide dog.

Braille for Breakfast

noreply@blogger.com (Jessica Kovacs) — Thu, 05 Dec 2013 03:29:00 +0000

A couple weeks ago there was a meeting at Tommy's school for the parents of children who will be learning Braille. They had a table filled with books, puzzles and other Braille teaching aides. There were two teachers and five parents/family members so we got lots of time to ask questions about our children.

Is it breakfast or an opportunity to sort different shapes? Or both!

Many of the parents had questions about things our children come home from school taking about. Who is Mat Man? What does big lines and big curves mean? We found out that the Mat Man is a figure used in the Handwriting Without Tears curriculum that many teachers use. It's very appropriate for visually impaired children because it incorporates body awareness concepts, cooperation, organization and sequencing. When the lesson moves to handwriting the children who will be learning Braille simply learn Braille then. Some children in Tom's class have enough vision to learn print so they learn handwriting.

Children build a Mat Man character from shapes and sing a Mat Man song. Big lines and big curves, (and small lines, and small curves), all go together to build a Mat Man. Oh the times I have heard Tommy talk about big lines and big curves! He is into it!

It was just great to talk with Tom's teacher and with other parents of visually impaired and blind children. I was so nice to have someone to talk with about Braille and blindness. I learned a lot and came away with a better understanding of how they are getting Tom ready for Braille and how I can support that at home.

Right now Tom is obsessed with touching my face. I used to laugh about how on TV you see blind people touching some one's face. Blind people don't really do that!!! But now Tom can't stop touching my chin and saying, "this is my chin!"Then he moves on to the nose and so forth. I think I can safely blame that on Mat Man! Maybe blind children do touch faces but I think it's just a phase.

I came home from that meeting full of ideas. It made me think of new ways to interact with Tom and new toys and activities for him. Play is learning for kids so why not take advantage of that!

We drove straight to Virginia to visit my brother and his family after the Braille meeting. Tom tried some of his cousin's cereal there and it dawned on me that cereal can be a pre-Braille activity! I noticed that Tom was picking through the cereal and only eating the crunch berries. (He's no dummy!)

Look at those shapes just ready for sorting!

The ability to sort and identify things with your fingers is an important pre-Braille activity. And you can use different cereals to do it! This is cheap and you can mix different cereals together to play with different textures. I might get a timer and see if we can make a game of picking out as many berries as we can and then counting them. I'm not sure how Tom would react to a timer but it's worth a try.

It's always a bonus to me when Tom can eat his lesson. He puts everything in his mouth anyway! I am planning on making some Christmas themed playing dough that is edible for that very reason. I can't get Tom to play with regular "Play Dough" at home because all he wants to do is lick it! Ugh. Time to whip something up.

The biggest takeaway from the meeting was to get Tom's hands busy. Touching, sorting, and messy play are serious pre-Braille work, but they should also be seriously fun. (He's only four and at that age learning should be FUN.) The business of children is play and they learn a lot from it.

We are also going to play with puzzles more. I want to try to adapt some puzzles we already have to include textures. I have been looking for some simple games but it looks like it's up to me to make some. I'll let you know what I come up with.

Let me know if you try a Braille cereal sorting game. I think it's fun!

Go Apply for Free Braille Books!

noreply@blogger.com (Jessica Kovacs) — Tue, 03 Dec 2013 14:55:00 +0000

I know I've told you about the Dolly Parton Imagination Library (DPIL) & American Printing House for the Blind (APH) book program before but I thought I'd remind everyone again.

These are beautiful books! The selections are popular mainstream children's books that you usually can't find in Braille. Do you like the Llama Llama books? They've got it! That's how we were introduced to Llama Llama.

Here we are, reading a book together!

By enrolling in the Partners Print/Braille Book Program, a child is able to receive five FREE print/braille books each year until reaching his/her 6th birthday.

APH selects the titles from the current year's DPIL booklist those most appropriate for a child with a visual impairment. Print/braille versions are mailed directly to the child's family.

If your child a potential braille reader under six years of age APPLY now for the Partners Print/Braille Book Program! Books are limited and enrollment is on a first come/first serve basis. Complete and submit the application form here.

It's so easy to apply. It takes about a minute to sign up. And it's exciting to see a new book show up in the mail every couple months.

This free service is made possible by generous donors from across the country. APH welcomes contributions to help defray initial costs and expand the program so that all blind and visually impaired children will benefit from this wonderful service. Donate Now!

Happy Texture Holidays!

noreply@blogger.com (Jessica Kovacs) — Thu, 28 Nov 2013 02:41:00 +0000

Happy Texture Holidays!

I have lots of holiday ideas brewing, but first I wanted to share some of my past holiday ideas. Sure, it's cold outside, but that means it time to get creative and have crafty fun indoors.

Tommy is a blind child but all children can benefit from the sensory aspects of these crafts. It may get you to think of new ways to experience holidays and make them more of a "touchy-feely" experience. All children love that.

Click on the links below for holiday craft ideas!

Tactile Holidays

Foam Wreath Craft

Winter Break Activities

Tree Trimming

Sensory Holiday Crafting

Homemade Christmas Countdown

Beautiful Words

noreply@blogger.com (Jessica Kovacs) — Tue, 26 Nov 2013 19:24:00 +0000

When you wait longer for your child to speak their words become precious. Just reaching out and calling for Mom is a huge deal, while speaking in a full sentence is cause for celebration.

Today Tom went home early from school because his Grandma ( and his ride home) took a half-day off. Tom and his Grandma were talking about where Tom's Dad is and had the usually discussion that Dad is in Ohio for work. Tom said, "I want Dad to come home. I miss him."

Those are such simple words but they so clearly express his understanding that his dad is away and his feelings and desire to see his Dad. That is something I am thankful for as we head into Thanksgiving.

I hope you are your family have a wonderful holiday!

Braille Books - Free Programs and Books to Purchase

noreply@blogger.com (Jessica Kovacs) — Mon, 18 Nov 2013 16:55:00 +0000

Tommy reading "Llama Llama Misses Mama" with Mom.
This book is from the Dolly Parton Imagination Library/APH Book program.

Did you know there are many free and affordable sources for Braille books for young children? You can sign up for free Braille books from the following programs right now and purchase other Braille books from several of these resources!

I've been signing Tom up for Braille book programs for a while and purchasing them regularly. Tom currently has 47 Braille books. Start your collection today! And Braille books make the perfect gift for the holidays!

The non-profits who run these programs could always use support, so if you are looking for great organizations worthy of your dollars, these are some great options. These organizations rely on donations to keep Braille books affordable for families. The real cost of these books is much higher than they charge.

Which Christmas book will Tommy choose?

National Braille Press Read Books! Program

National Braille Press, along with Seedlings Braille Books for Children, is distributing braille book bags to families with blind and visually impaired children, ages birth to seven, across the U.S. and Canada. The distribution process is a collaborative effort with educators and early intervention professionals. Note: Limited to one braille book bag per blind child. Request a Readbooks! Book Bag.

Seedlings

Book Angel Program gives two free Braille Books per year. You have to send them an email every year and let them know what books you want! Seedlings has a large selection of children's books in braille. They are quite affordable and ship quickly.

Tom's books from Seedlings Book Angel Program

Dolly Parton's Imagination Library

The Dollywood Foundation and the American Printing House for the Blind (APH) are partnering to provide young blind and VI kids with print/Braille books. This is a great program! Children get five free print/Braille books each year until their sixth birthday. These are beautiful books. Sign up today!

Braille Institute's Special Collection

The Braille Special Collection program is designed to increase braille literacy by providing blind and visually impaired children with free braille books and storybook kits throughout the year, free of charge. This program fosters a love of reading by helping children create a special library of their own.

Any visually impaired child living in the United States or Canada is eligible for the Special Collection program and may order up to 12 braille books a year from our seasonal catalogs. How to sign up- Please include the full name of the child and/or student, the child's age, home address, telephone number and e-mail address if one is available. Please note that orders must be sent to us via U.S. mail using the attached order form in the catalog.

For more information: Call 1-800-BRAILLE and ask for Braille Publishing, or call directly to 323-906-3104, Monday through Friday 9 a.m. to 5 p.m. (PST), or email specialcollection@brailleinstitute.org.

We read Llama Llama a lot! It's a favorite.

American Action Fund for the Blind Free Braille Books Program

In 1997 the AAF started this program to provide blind children a free Braille book every month from a popular children's reading series. The books are for the children to keep and collect for as long as they want them. All blind youth, blind parents, teachers of the blind, schools, and libraries serving the blind are eligible to participate in this program. Participants may enroll in or withdraw from the program at any time. (FYI- these are for older children who already can read Braille. They are not twin vision books – there is no print!) https://actionfund.org/braille-books-program

Future Reflections

Subscribe to Future Reflections for yourself (Free)

It is a quarterly magazine published by the American Action Fund for Blind Children and Adults in partnership with the National Organization of Parents of Blind Children. Most of the articles are written by parents and the subjects are all the daily living and educational challenges we face as parents of blind children. I look forward to every issue!

• To subscribe to Future Reflections by e-mail- www.nfbcal.org/listserv-signup.html, and follow the instructions.

• To subscribe to Future Reflections in print or on USB thumb drive, send an e-mail to nfbpublications@nfb.org. Include your preferred medium in the body. Please include your address, whether you are a parent of a blind child (and, if so, include your child's name and birth date), a teacher, or other subscriber.

Feel that Braille - and the soft bunny - on this touch and feel book from Seedlings!

Beulah Reimer Legacy

BRL offers print/Braille children's books at a very affordable cost. These "twin vision" books allow sighted family members to enjoy books with their blind children. Clear plastic strips of Braille are added to print books so everyone can enjoy. BRL has a great selection of books! Check them out.

Don't forget - Braille Books ALWAYS SHIP FREE MATTER FOR THE BLIND.

Road Trip!

noreply@blogger.com (Jessica Kovacs) — Fri, 15 Nov 2013 03:31:00 +0000

Tom is ready for the road trip!

We are going on a fun road trip (not medically related) this weekend to visit my brother and his family in Washington DC. I'm so excited to see my three nephews, my brother and his wife, and maybe even some other family that might drive in for a visit. My brother is in the military so we try to take advantage of it when he and his family are within driving distance of us.

Tom is quite the road warrior. He went on his first road trip at two-weeks-old for his first eye surgery in Detroit. We were regular visitors to Detroit Tom's first year but now most of our trips are just for fun. I can't tell you how happy I am about that change!

It is a challenge to keep Tom occupied in the car. He won't be happy looking out the window like a sighted child and I can't just play him movies. So how do we do road trips with a blind child? We prepare!

Tom's bag of snacks and feeding supplies is pictured below. You know the clear plastic bags that sheet sets and curtains come in? Well don't just throw those away - use them! It is great for storing little toys or making little organized sacks for trips.

I keep a bag like this in both of our cars that I pack with g-tube supplies in case of an emergency. I know from experience that you can't expect a hospital to have the right g-tube supplies on hand. They might have the supplies in the hospital, but it might be an hour before they can get you the connector or other item you need. I like to be ready with my own stuff and now I always am. I love that the bags are clear. It is comforting to know just by looking what's in a bag.

Food & tube feeding bag (yes, it's the bag my bed sheets came in)

Contents of Tom's magic tube feeding & snack bag:

Honey nut Cheerios
Mott's fruit gummies
Oranges
Diced peaches
Mini pretzels
Cheese bunny crackers
Mini graham crackers
Feeding tube supplies ( bolus, extension set, syringes)
Neocate Splash
Microwave Mac n Cheese
Tom's favorite type of spoon

I am working in the morning and then going to a quick meeting at Tommy's school before we get on the road. I am hoping that Tom will decide to take an afternoon nap. He usually likes an afternoon nap. I've got a bag of toys and his iPad all charged up. Kid songs and audio books will keep him busy while he is awake.

If we get desperate we can start singing Christmas songs again! One road trip to Maryland was rough for Tom and singing song after song was the only thing worked. I sang a lot of songs that trip! I'm hoping for smoother sailing tomorrow. Have a great weekend!

Educational Goals and Progress

noreply@blogger.com (Jessica Kovacs) — Thu, 14 Nov 2013 03:39:00 +0000

A retake of his annual birthday picture on the bench outside of our house.

We got a progress report in the mail today from Tommy's school. The report details each goal and provides a chart that shows nine data collection points over the current school year per goal. That way you can see trends in the child's progress. At the bottom of each page is a little description of the ways the goal is being accomplished and how the child is doing.

Here are some of Tommy's goals and a description of what he's doing to achieve them:

Goal #1
Using a prescription long cane, Tommy will travel routes of increasing complexity to make a delivery or locate an object. (Tommy is doing a good job of learning two specific routes that involve going to a different floor. His pace is better and he is maintaining his cane in diagonal technique!)

Look at the way he holds his long white cane. With authority!

Goal #2
Tom will demonstrate the concepts of same and different to match materials/objects/items during individual lessons. (Tom has made tremendous progress labeling two different kinds of objects and is beginning to "sort" them. He clearly understands the tactile differences. We work on this goal at the water table using miniature plastic apples and bananas. The objects will change in the next nine weeks to increase his opportunities to recognize tactual differences in other materials. )

Those are just two of Tom's many goals but I think it gives a good idea of the type of work he does at school and how they are challenging him. Orientation and Mobility is very important to me. Tom is an active and adventurous child. He needs to be able to travel where he wants to go safely and independently. I am so proud of his progress!

He has been obsessed with the elevator lately and now I know why! He's taking it for O&M if he's moving between floors as part of his lesson. At home he talks about the elevator and plays a little elevator game where he acts everything out. At first we thought he was talking about an alligator but when we figured out he meant elevator it all made so much sense!

This kid can do it all!

Tactile discrimination is the foundation for Braille readiness! Getting those little fingers to think and feel and make sense of the world is just the beginning.

This Friday at school they have put together a small in service for parents of children who will be learning Braille. I have my "Just Enough to Know Better" book and many others on Braille so I have a basic understanding. I haven't taken a Hadley School for the Blind class yet but I plan to. I'll do that when things slow down I guess! I don't want to wait until Tommy passes me up in Braille to get started, but I guess that's how that usually works, right?

A Hot Cup of Tea

noreply@blogger.com (Jessica Kovacs) — Thu, 07 Nov 2013 04:13:00 +0000

A hot cup of tea on a cold night is heaven. And these days Tommy agrees! Now he's always asking me for hot tea and on the weekends he wants sips of his Dad's coffee. He has the strangest palate!

Tommy enjoying a hot cup of tea!

But anytime he asks for food or a drink it is music to my ears. He was indifferent to food and drinks for so long. To see him enjoy and request food is wonderful. Just tonight he told me that he loves peaches. And he does, but I still can't get over him saying that!

I'm drinking all your tea!

I used to search for other parents who had a child that didn't seem to have a hunger or thirst drive but I never found anyone with a child quite like Tommy. It can be so hard when it seems like no one understands your challenge. I found tons of parents of children with g-tubes but never really found any who identified as having a g-tube for food refusal in infancy.

You would never know it to look at him now, but Tom once had failure to thrive because I could not beg, prod, or force him to eat. That's how he ended up with a g-tube placement two weeks before his first birthday.

It took a long time and lots of feeding therapy to get where we are today. I can't tell you how awful it is to not be able to feed your child. It's scary and frustrating. The tube gave him the nutrition he needed finally but then we wondered if he would ever want to eat by mouth. Would he every enjoy food or would he maybe learn to just eat it anyways one day?

Today Tommy eats and drinks but he does it on his own schedule. Some days are amazing with him eating everything in sight, while on other days he seems to refuse everything. I never know what his eating will be like from day to day, but I do see a definite pattern of improvement.

Sad News

noreply@blogger.com (Jessica Kovacs) — Mon, 04 Nov 2013 03:33:00 +0000

Our cat Noodle died this weekend. She was rather intense, but she had that magnetic personality that drew people in even when they knew they would probably get scratched. But they always came back for more! Must have been the extremely fluffy fur.

Tom and Noodle catching a nap.

Noodle was great for encouraging Tommy to explore texture and he thought her meows and noises were hysterical. He went from tentative touches of her fur to actual snuggles at times. Tom is the only person to rest his cheek on her side and live to tell the tale! She only scratched him once and that was when he fell on her. They both got over it quickly. Sure, he knocked her over sometimes and occasionally chased her down, but she was very understanding when it came to Tommy. She gained quite a reputation as a fearsome animal in her ten years but she was never anything but kind to Tommy.

Tom rockin' out on the keyboard with his buddy Noodle.

She and our other cat Monty have always given Tom a wide berth. The cats often sat together watching him, ready to get out of his way when he gets too close. But they always let him get some pets in when he came across them. I love the way they understood Tom. Monty is still here and he can take over as Tommy's nap partner. Life just won't be the same without our fluffy menace.

Would you risk a scratch to pet this giant white fluff ball? Yes, you would and many did.

Our poor kitty had diabetes for several years and it all became too much for her. She will be greatly missed! Rest In Peace Noodle.