WonderBaby.org: Resources for Parents of Blind & Disabled Babies & Children

8 Creative and Unique Ideas for Decorating a Blind Child's Room

Amber Bobnar — Wed, 05 Apr 2017 22:12:01 -0400

A right of passage for many kids is the opportunity to decorate their own room! Even just moving from a baby quilt to a big-kid comforter can be a big step in development and independence for many kids.

When your child is blind, you may have to be a bit more creative when coming up with fun room decorating ideas, but that's what makes it interesting and unique!

Here are some ideas for tactile room decorating for kids who are blind or visually impaired...

Look for textured quilts, both for the bed and for the wall. We've hung a brightly colored textured quilt on the wall next to my son's bed. It's nice to touch and also warms the sounds in the room by providing something to absorb echoes.
Bead doors are fun to touch and make a lovely sound when passed through. If you can't hang the beads in a doorway, they are also fun to hang on the wall.

Consider lighting. Does your child need bright lights in order to see better? Then it's probably a good idea to adjust the light fixtures in their room. You can also play with rope lights around the bed, Christmas lights hung from the ceiling or soothing light toys, like the Twilight Turtle.
Does your child make tactile art at school or at home? Frame them! We picked up some cheap wood frames and popped the glass out of the frame. Now we can easily frame tactile art on the wall... and the artwork is still open to touch!

How about a touch wall? Just cover some thick cardboard with felt or other material that velcro will stick to. Hang on the wall and add velcro stickers to toys in different shapes and textures. We also added a bar below the touch wall to assist in standing.
Don't forget about high contrast colors! If your child has vision, play with colors they like and paint different colors on the walls. If you paint the walls with a dark color, place light colored decorations or wall decals on the wall so they show up better.

Add braille wherever you can! Label objects in the room, hang large wooden alphabet letters with braille on them, or even create your child's name in print letters with braille on each letter. Instead of simply painting each letter, consider adding textures and 3D objects, like Cameron's mom did for his room!
Follow their lead. Is there something your child really loves? Go with it! My son loves stuffed animals and pillows so we created a soft stuffed animal corner with a beanbag chair that he can lounge in. Our friend's daughter loves to play piano, so they built a bookshelf at just the right height for her to stand and play her keyboard.

What have you done to make your child's room special, unique and accessible? Do you have ideas to incorporate textures, lights or sounds into your decorating project? Let us know in the comments below!

EDA PLAY ELIS App Review & Giveaway!

Amber Bobnar — Thu, 23 Mar 2017 14:02:17 -0400

EDA PLAY ELIS is the newest app from EDA PLAY and, as with all of their other awesome apps, it comes with a seal of approval from WonderBaby! And you can enter to win a copy here! EDA PLAY ELIS is deceptively simple: The player is confronted by a number of doors and has to tap the screen to open each door. What is hiding behind the door?

What makes this app special is that it is designed for young children who have low vision or CVI and who are learning how to use their vision. The screen is black with high-contrast objects displayed on the screen. The objects may move around the screen to encourage tracking and they are always accompanied by sounds.

Each door opens to a new game or activity which increases in complexity as you play. To begin the game, tap anywhere on the screen to open the first door. You find a ball and an apple and are asked to identify which is the ball. Once you've tapped on the ball, the apple disappears and the ball bounces up and down paired with a bouncing sound.

As you progress through more doors, your tasks become more complex and also require the player to use more visual and fine motor skills. For example, behind one door is Sam the dog. Sam has run away and you need to help catch him. The white dog moves around the screen and your child needs to follow his movements and tap on the dog in order to get him to stop and bark. Here's a quick clip from the app:

As you can see in the above clip, the game is voiced by a clear and friendly child who gives directions through all of the activities. Besides offering bold, high-contrast images, simple patterned movements and clear sound effects, this app also has other features that make it stand out:

Adult caregiver buttons that are easy to access in the corners of the screen, but require a long tap, making sure kids won't accidentally move from the game to the admin screens.

A Task Overview screen where caregivers can choose to start the game on a specific scene, can turn off all the "open the door" scenes, or can even choose to just run one activity repeatedly.
A Settings screen that allows you turn the audio guide and sound effects on or off. You can also add a white frame to the game screen to help your child focus.
A Skills screen that allows you to review how your child has been responding to the game. You can see how many tasks they've completed, how long they played and how many times they touched the screen.

Do you want to learn more about other apps from EDA PLAY? Check out these reviews:

Do you want to win a free copy of EDA PLAY ELIS PLUS a bonus copy of EDA PLAY PAULI? Just use the widget below to enter to win a free app download. We have 20 copies of both apps to give away! We will be accepting entries until April 6th 2017. Good luck!

Decorating Tactile Easter Eggs with Your Blind Child

Amber Bobnar — Mon, 20 Mar 2017 13:38:10 -0400

Ivan loves to work on a "project" or "activity." These are words that make him happy! But putting together a craft project or activity that is accessible and fun for him can be a challenge. Over the years I've learned that it's important to think about the process more than the finished product and to be prepared from the beginning.

So that's how we approached our Easter Egg decorating project. I wanted to try egg dying (more for the experience than the colors since Ivan is totally blind), but also wanted to add a nice tactile element that Ivan could appreciate.

What You'll Need

What We Did

We started out by picking up some fake eggs. Yep, you read that right. Real hard boiled eggs pose more challenges than I thought would be necessary (mostly cracking from being held too tightly or being dropped on the floor). This can also be a great alternative for kids with egg allergies. These eggs look and feel a lot like real eggs, but they're less fragile and easier to handle.

We then filled 12 paper cups with hot water, vinegar and food coloring. You can follow the decorations on the food coloring package for ratio of water to dye, but keep in mind that fake eggs do dye lighter than real eggs, so you may want to use a bit more dye than is called for (we used the recommended amount and our eggs are light, but still pretty and festive).

But there is one issue with these fake eggs. They don't sink. As in, when you try to dye them, they float. Ivan really enjoyed placing each egg in its cup (a great fine-motor activity, by the way), but in order to get the eggs submerged we then stacked the cups on top of each other. I really don't know how we didn't end up with food coloring everywhere... but it worked!

Once our eggs were dyed and dried, the real fun began. I purchased tactile foam stickers and jewel stickers to decorate our eggs with. The stickers are pretty, seasonal and super easy to apply (making the activity accessible for kids with low tone)... plus you can FEEL the stickers on the eggs!

Touching the decorated eggs was Ivan's favorite part. And since our eggs aren't perishable, we can keep them out on the table and play with them every day until Easter... and then bring them out again next Easter when we make more!

I hope you have fun decorating eggs with your kids this year. Do you have any ideas to make the project more accessible? Let us know in the comments!

20 Multi-Sensory Easter Basket Ideas for Kids with Sensory Impairments

Amber Bobnar — Thu, 16 Mar 2017 13:04:41 -0400

There are lots of ways to make your Easter Basket multi-sensory and accessible for kids of all abilities, including kids with sensory impairments. You might want to throw in some fidgets, chewies or light-up toys, for example (and you can find lots of ideas for fun small multi-sensory toys here).

But if you're also looking to keep the Easter theme, then you might be searching for things like talking, tactile or noise-making eggs. Or maybe touch-and-feel Easter books, stuffed bunnies that call out to you to find them, or an Easter-themed Mr Potato head.

Yep, all that's out there just waiting for you to find it! Kind of like an Easter egg hunt!

Below you'll find some of our favorite tactile, talking and developmental Easter toys that would be perfect for your multi-sensory Easter basket. We've organized them by five categories: Talking & Noisy Eggs & Bunnies, Tactile Eggs, Glowing Easter Toys, Interactive Easter Toys and Touch-and-Feel Easter Books.

Talking & Noisy Eggs & Bunnies

Max & Jojo's Talking Hide and Seek Easter Eggs: These talking eggs have become a must-have in our house every Easter. Each egg calls out to you, saying things like, "Yoohoo, I'm over here!" until you find it.
Build-a-Bear Hide & Go Beep: The Hide & Go Beep is similar to the talking eggs, but comes wrapped in a soft bunny or bear! You can place the Hide & Go Beep sound in any Build-A-Bear friend.
HABA Wooden Shakin Eggs: These eggs are large (great for holding) and made of wood. Each egg makes a unique sound when you shake it.
Tomy Hide & Squeak Eggs: Crack open the eggs to reveal colorful chicks hidden inside. Press on the chicks to hear them cheap!

Tactile Eggs

Tactile Matching Eggs: These plastic eggs are white on the outside and colorful on the inside, and each egg is imprinted with a shape that can only match to itself. Can you put them all back together?
Play-Doh Spring Eggs: Play-Doh is always a fun tactile game in our house - and these Easter eggs are pre-filled with Play-Doh!
Egg Shaped Porcupine Balls: What tactile Easter basket is complete without porcupine balls shaped like Easter eggs?
Hide 'Em and Hatch 'Em Super Sized Grow Eggs: Find the eggs, place them in water, then watch (and feel) them hatch! After the eggs crack and hatch, a small toy will appear and continue to grow if you leave it in the water.

Glowing Easter Toys

Light Up Spinning Egg Easter Toy: Bright red, green, orange and blue LED lights spin in this egg when you press the button.
Glow in the Dark Easter Eggs: Turn off the lights and have an Easter egg hunt in the dark this year!
Light Up Squishy Chicks: Fun to squish and hold and they also glow when you shake them!
Glow In The Dark Easter Putty Eggs: Silly putty is stretchy, slippery and gooey. What could be better than that? Putty that glows, of course!

Interactive Easter Toys

Prextex Stacking and Nesting Easter Eggs: Very similar to traditional stacking and nesting toys, but these are all shaped like Easter eggs!
Pretext bump ‘n go walking egg laying duck with lights sound ‘n music: The name says it all! This duck will lay eggs while moving about and singing. The lights are a special bonus!
Silly Egghead: This game is just like Mr Potato Head, but instead of dressing up and designing a potato... it's an egg! Comes with Easter-themed items too.
Hog Wild Bunny Popper: This is a great fine-motor toy. Squeeze the bunny to get the ball to "POP"!

Touch-and-Feel Easter Books

Pat the Bunny: This book is a classic for a reason! Pat the Bunny is easy to read (and easy to braille) and includes lots of fun interactive objects to touch, move or smell.
Baby Bunny Finger Puppet Book: Finger puppet books are always fun! You can place your finger through the puppet and make it move while you read the story.
Little Chick Finger Puppet Book: Another finger puppet book for Easter. Both books are small and would make a great set for an Easter basket.
Bright Baby Touch and Feel Easter: This book has quickly become a classic Easter book. It's another book with lots to touch and easy to braille too!

Taptilo Braille Keychains Giveaway!

Amber Bobnar — Thu, 09 Mar 2017 14:15:20 -0500

This contest is now closed and the winners have been contacted. Congratulations to the winners and thank you to everyone who entered!

Taptilo is a new braille game for kids learning to read and write in braille. The game was created by OHFA TECH, a leading accessible tech company in Korea, and is comprised of a refreshable braille display plus removable braille cell blocks. The combination of braille display and blocks is a fun way for kids to play with braille in toy form, while also learning how to use a refreshable braille display, an important tool they'll need as they grow.

Want to get a closer look at Taptilo? Watch this video below:

The Taptilo will be available to purchase later this year (meanwhile you can check out their site and request a quote), but until then, you can also enter to win a fun braille keychain made from the Taptilo braille cell blocks!

The blocks are sturdy and you can create any letter simply by pushing the tabs in and out of position. Just like the Taptilo game, the blocks come in a variety of bright colors.

This is a hands-on way to learn more about the Taptilo device and also bring more braille into your child's day!

Would you like to win a free braille keychain block from Taptilo? Entering this giveaway is easy! Simply use the widget below to enter. We'll be accepting entries until March 23rd, 2017. Good luck!

To my best friends and support network that I have never met

Amber Bobnar — Tue, 07 Mar 2017 14:00:30 -0500

Two off handed remarks I made during a phone call to a PT last week have stuck with me. The first was, "Sorry I have been harassing you with phone calls and emails over the last three weeks. I just need to have this question answered." The second was "...oh, yeah, you know us special needs moms, we're doing 1,000 things all at a mile a minute." Then I thought, "Why am I justifying my franticness to her? She doesn't care why I'm crazy about this stuff."

But someone out there does care.

Who responds when I flash my Special Needs Bat Signal? My friends on social media. Thanks to social media I am connected to other parents who are trudging along the same mile in worn-out shoes and it's here that I don't need to justify my kooky phone call habits. For myself, tweets, blogs and Facebook groups have become, in most cases, a non-judgemental sounding board to ask for feedback, discuss therapies, swap medical supplies and quite simply escape for a few minutes a day amongst people who understand (FYI for my escape I peruse LuLaRoe boutiques on Facebook and Calvin and Hobbes on twitter).

Social media was not always a good fit for me. After my daughter Shelby was diagnosed with CHARGE Syndrome I joined the CHARGE Facebook group and I was not ready for it. I was too fragile, bitter and scared to hear about the realities some of our kids face. I left the group and did not rejoin until after I went to my first CHARGE conference. It took meeting real families and real CHARGErs to give me hope; I needed to see similarities in our kids and hear the amazing stories of our kids overcoming INSANE obstacles.

Now the CHARGE syndrome, Parents of Special Needs Kids of the South Shore, Blenderized RN, Kids Born with Tracheoesophageal Fistula and Esophageal Atresia, and Supporting Families Facebook groups (among others) can be my sanctuaries because I have balance (and yes, there really is a Facebook group for everyone).

I'm not referring to balance that comes with being further along in our journey. I have balance because I have met and connected with other mums from special needs playgroups, conferences and random encounters in the hospital, and sadly but realistically these friendships could not continue without social media. These women may never know how much I treasure their real and physical not-from-behind-a-screen-friendship and how they enrich my life. It is the combination of social media and real people that have helped me become a stronger and better mum to all of my girls.

It feels funny talking about my friends on Facebook, other mums I may never meet or am no longer physically connected to but who have helped me so much. My Facebook mums are not scratching their heads trying to understand why I am not just giving Shelby ice cream to get her to eat by mouth, they know it's a neurological, sensory and physical issue. These parents are on my team, or maybe more to the point, on Shelby's team. Many without knowing me personally know how much I do, they know I do enough. They are cheering me on, comforting me when I hurt, answering questions with helpful solutions or in a more tactful way than friends and family who do not understand our life. I know I am listened to and truly understood.

So, mum-I-may-have-never-met, I love being able to support you. Thank you for sharing your life with me and being open to helping me too. You make these spaces safe because the PT I spoke to on the phone may meet a lot of us special needs mums but she isn't one of us, she does not understand that we are constantly doing for our kids, fighting for our kids, fretting for our kids and second guessing ourselves over our kids.

You get it. Thank you for being there.

Nicole Feeney writes about how God grew the Feeney family from two to four to five in two quick years... and the subsequent adventures on her blog, Fab Feeney Five.

Looking for LCA Advocates to Join Spark's RPE65 Advisory Boards

Amber Bobnar — Thu, 02 Mar 2017 16:48:50 -0500

Spark Therapeutics and the Snow Companies, a healthcare communications company, are currently working together to identify people living with and/or actively caring for someone living with an RPE65-mediated inherited retinal disease who may be interested in sharing their opinions and experiences at a Patient Advisory Board.

This series of Advisory Boards will be with members of the community living with an RPE65 genetic mutation. Spark is recruiting patients (and their caregivers) who meet the criteria below to participate in these Patient Advisory Boards. Eligible individuals will participate in a one-day Advisory Board which allows people with an RPE65-mediated inherited retinal disease to contribute feedback to Spark Therapeutics' existing materials and programs, as well as patient services programs in development. This is a great opportunity for advocates!

They are seeking individuals who:

Are 18 years or older
Diagnosed with or are actively caring for someone diagnosed with an RPE65-mediated inherited retinal disease
have not had previous treatment with gene therapy
Live in the United States
Are willing and able to travel
Are willing to share their opinions and experiences

If you know anyone who fits these criteria and may be interested, they would love to hear from you. To maintain confidentiality and privacy, individuals are asked to self-nominate for this opportunity by contacting the Snow Companies at 1-844-706-5725.

Saving Vision by Tricking Rods into Thinking They're Cones?

Amber Bobnar — Mon, 27 Feb 2017 10:49:51 -0500

There are so many different approaches on the horizon for treating inherited retinal diseases, like Retinitis Pigmentosa (PR) and Leber's Congenital Amaurosis (LCA).

Here's a new one that is working in mouse models and seems really promising! So you know how the retina is comprised of rods and cones? Well, apparently when there is retinal degeneration the rods tend to die off first and as the rods are lost the cones quickly follow because cones depend on rods for their survival.

This means that, logically speaking, if we can save the rods then we should also be able to prevent cone damage as well.

With this in mind, researchers decided to try a new approach targeting rods... and tricking them into thinking they're really cones! Using a compound that blocks a certain gene activity, researchers were able to turn rods more cone-like in mouse models and preserve them from degeneration.

What is the benefit? Well, if the rods don't die, then the cones are also preserved. However, now with the rods acting more like cones it does mean that patients would lose the vision abilities usually supported by rods (such as night and peripheral vision).

Yes, it's a little confusing, but also pretty fascinating! You can read more about this approach on the Foundation Fighting Blindness blog.

My child has LCA and presses her eyes. Is this normal? What can we do about it?

Amber Bobnar — Mon, 20 Feb 2017 15:57:19 -0500

As the parent of a child with LCA I can tell you that yes, it is common for kids (and even sometimes adults) with LCA to press or poke their eyes. Below we've collected frequent questions and answers about eye pressing from the LCA Support group on Facebook. Hopefully this will help you understand what eye pressing is and what you can do about it.

Before reading all these questions and answers that have arisen over time in the group, I want to reiterate the basic message that comes up again and again: "Try not to stress about it too much. He/She will grow out of it, or not."

When and why do people with LCA press their eyes?

When bored, stressed, tired.
Most people say that it just feels good or it removes an itchy feeling that they experience.
This habit seems to affect the majority of people with LCA, and to some degree it is a lifelong habit for many people. Although it is not entirely clear why babies with LCA pick up the habit and continue it throughout their lives, there is often a kind of reflex-like quality to it, which makes it difficult to stop completely. However, as kids get older they can learn to minimize how often they do it. I believe the worries about eye damage from poking are sometimes a bit exaggerated, but I also believe it is good to try to discourage it both for the sake of eye health and because it tends to bug a lot of sighted observers.

Did you, or your child, stop eye pressing at a certain moment?

Our son pressed his eyes until he was about six. We tried everything to get him to stop and the thing that worked was bribery. We said if he could manage to not do it for a week, we would get him a toy he was after.
It's a battle. Plain and simple. My son is ten and still does it.
Even as an adult, I'll admit to occasionally catching myself pressing when I'm especially tired or stressed.
I wouldn't say I have "grown out of" eye pressing. I always have the urge to do it on some level, I've just gotten a lot better at controlling it.

Can my child’s eye poking result in vision loss or damage to the eye?

No one really knows. The doctors/scientists all write a paragraph that goes like this:

The characteristic extraocular sign in LCA is Franceschetti's oculo-digital sign, comprising three components: eye poking, pressing, and rubbing. It is not known why this behavior occurs. The major sequelum is enophthalmos, a physical defect in which the eye recedes into the orbit, presumably from atrophy of orbital fat. Keratoconus has been said to result from the repetitive trauma to the cornea, but others have suggested that this may be a feature of LCA itself.
(from GeneReviews)

Since so many people with LCA eye-press, it's not clear whether the eye-pressing actually causes the cataracts or keratoconus, or if those things would have happened anyway without eye-pressing (just from the course of the disease).

Some parents worry that eye-poking affects their child’s vision. Below you can find a collection of parents’ or persons’ comments:

It was heartbreaking to me, it seemed like that was her stimulation, she also used to keep light up toys too close to her eyes. I always worried that would hurt her. Now she is eight years old, and can see a lot more than we ever imagined. Reading large print, seeing colors. Faith and patience.
My son has given himself a cataract in his right eye but as he has never had any vision since birth this doesn't affect him. We can see it and if when he's older he wants it removed then that will be his choice.

What can I do to help my child play independently without eye pressing?

Some people mention that wearing glasses has reduced the eye poking.
Remind them to put their hands down.
Keep hands involved with something else, like music instruments, favorite toys, blankie, etc.
Let her develop a sense of space by playing with favorite toys on a resonation board. She will not lose her toys so easily and it is easier to search within these boundaries. Tell her where her toy is, left/right – in front/behind. All this to become more independent and thus be bored less often.
When he gets older, reminders or even a reward for keeping his hands down in school or other public settings will help him build control and awareness of the habit.
I would advise against doing anything to restrain his hands though since his hands are his windows to the world especially when he is so young.
When the child is a bit older you can tell him/her a code word like "butterfly" to make him/her aware of the behavior and urging him/her to stop.
Let him wear a bracelet. The aid/para can push a button from a distance if he is poking or rocking a lot. This gives him a discrete vibration in the bracelet that lets him become more self-aware of his behaviors and allows the aid to sit across the room and does not require verbal cues.

Leaving no one 'LCA patient' behind: Rare Diseases International policy event

Amber Bobnar — Mon, 20 Feb 2017 10:13:25 -0500

Laura Steinbusch

"When you received your, or your child’s, diagnosis you might have felt as if in the desert; alone and no idea which direction is the right one" (Jim Green, International Niemann-Pick Diseases Alliance, President).

Yes, maybe sometimes, but during the policy event of Rare Diseases International I felt anything but alone.

Over the last two years I have learned a lot about the genetics behind my son’s disease LCA10, about raising a blind child and also about all the stakeholders – policy makers, regulators, insurances, basic researchers, industry, clinical research organizations, medical doctors and patients - that are involved in bringing a possible treatment to the patients.

Living in the Lake Geneva region has one advantage, many global health organizations have their basis here and thus conferences are often taking place. This month, Rare Disease International organized a policy event about "the right to health."

So what interesting things did I learn for the LCA community? Here are my three biggest take aways:

Firstly, that policy makers all over the world have been working hard to create global associations, e.g. the event was opened by our own Retina International President Christina Fasser who ended her speech by saying that together we should achieve that "No one is left behind".
Secondly, that these global associations have worked hard to get a seat at the United Nations table. Yann Le Cam, the CEO of EURORDIS & Rare Diseases International (RDI) explained that RDI has created a NGO Committee for Rare Diseases whose goal is to include rare diseases in the 2030 Sustainable Development Goals, e.g. the right to health, education and work.
Finally, that researchers have gathered in the International Rare Diseases Research Consortium in order to achieve their vision "enable all people living with rare disease to receive diagnosis, care and therapy within one year of coming to subspecialty medical attention".

Big visions and great goals. It made me hopeful for a future with inclusive education for all our children, job possibilities for all our children, a quick diagnosis for new patients and maybe a treatment for improved vision.

What can you do? Help the BLACKSWAN Foundation by signing their petition to increase support for rare diseases research.