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

New NBC Show about a Blind Dad

Amber Bobnar — Mon, 20 May 2013 21:19:23 +0000

NBC is planning a new show for the fall called The Family Guide. The show follows a family, the Fishers, who are dealing with a common problem: Divorce. But, as the summary explains, the Fishers are not a common family. First of all the dad, Mel Fisher, is blind: "Whether it's chopping down trees, showing his daughter how to drive or playing football with his son, he's never let the fact that he's blind slow him down."

Obviously NBC is planning to portray an active and enthusiastic father who just happens to be blind and I'm sure we all hope they present his blindness in a fair and positive manner.

Kudos to NBC for planning the show... now let's watch them carefully to make sure they do it right!

Fun & Games

Making a Love Book for your Visually Impaired Child

Amber Bobnar — Fri, 10 May 2013 02:16:44 +0000

I wrote in my other article, How to Adopt a Special Child, about the steps we've taken to adopt our two special children Nellie and Marin.

During the first visit to meet their adoptive child, many parents present their newest child with a small photo album of their future home and family. Since Nellie is visually impaired I knew that this book would be tactile. Since Marin is older (he is 8 now but will be 9 when he arrives), I decided to phrase their books in the form of an invitation.

There is a touching scene in Downton Abbey season 2 (oh, how I miss that show!) where Daisy, the kitchen maid, is fretting about visiting her late husband's father at his farm. She married her husband not because she was in love with him, but because he was so in love with her and he was dying. When she finally visits her father-in-law and they sit down to tea he issues her an invitation: "Will you be my daughter, will you let me take you into my heart and pray for you and make you special?"

I want Nellie and Marin to know how special they are to us and how it is a privilege to be given this opportunity to be their parents.

Anyone with any crafting ability can make a tactile photo book for their child. I started by visiting my local office supply store for small binders in colors I associate with my newest children (purple for Nellie, blue for Marin). While I was there I also picked up plastic photo inserts for photos sized 4" by 6".

Since my photo book will have text in English as well as Bulgarian I opened up Google Translator.

Dear Nellie, will you be our daughter?

I put the text in Google translator and cut and paste it in a word document. Then I printed all my captions on cardstock.

Would you like to give and get hugs from your sister?

Then I slipped the copy behind the picture before it so it read like a story—text on the top page, picture on the bottom.

Would you let us celebrate your birthdays with cake and presents?

Then came the fun part—I went to the craft supply store and spent way too much on scrapbook embellishments. Raised, bumpy, velvet—I purchased anything tactile. Then I decorated.

Will you learn and play with us dear Nellie?

And I used foam words for more tactile goodness. If Nellie was reading braille I would have added braille to the pictures.

I imagine Nellie and a caregiver running their hands over the bumpy pictures and laughing over our clumsily translated Bulgarian. I don't think that these pictures will mean much to Nellie—they are quite complex. But I love that I'm giving her something tailored to her needs and I'm hoping she feels our love in the bumps. I will be using the same technique for her life book (the equivalent of a baby book).

We have a lot of love in our family and would like you to be our daughter.
We love you very much!

Kimberly Schildbach LMHC, M.Ed. is trained as a family therapist but loves being a homemaker. She lives with her family of 6 (now) in Western Massachusetts where they tend a flock of naughty chickens and troupe of bantam ducks. Nellie and Marin will hopefully be coming home by December of 2013. Please visit her blog at: www.bringingnhome.blogspot.com for all the latest updates or to help them in their fundraising efforts.

Articles:

Make Your Own

Author

Kimberly Schildbach, M.Ed., LMHC

Make Your Own Morris Bells!

Amber Bobnar — Tue, 07 May 2013 14:43:31 +0000

When I was a young girl I was part of a folk music group in my local community. Each Spring, one of the older members would invite everyone to a morris dance exhibition.

On the year I attended, I was so impressed with the coordinated dance steps and the energy and enthusiasm of the participants. The dance seemed full of life and vitality and I loved how the bells worn on their feet merged with the music and became a part of their dance.

Whether it's time to welcome the Spring or just enjoy some music and exercise, here is an easy way to create some simple morris bells for kids and encourage them to dance and move – indoors or out!

What You'll Need

Here are the supplies you need to create one pair of children's morris bells:

Two short lengths of elastic of any width (about 10–14" long)
A handful of jingle bells
Any number of extra buttons, beads or similar jangles
Assorted ribbons, yarns and embroidery thread
Needle and thread

Making Your Morris Bells

Start by cutting two pieces of elastic and making sure they can comfortably stretch around your child's leg and sit just under the knee. Leave a bit of extra length so the elastic can overlap. That will be where you will sew or pin it in place.

Place your elastic "laid out straight" onto your work area. Create the hanging jingles by threading a jingle bell on a small ribbon or piece or embroidery thread. Tie it onto the end and then add on any other buttons, beads or bangles that you like—this is where your child can get involved and really let their creativity shine. When you've reached the desired length, tie it in place onto your elastic. Add as many of these as you like.

Add some ribbons or yarn to the morris bells. Sew or tie them into place. They may not add to the sound of your instrument, but they will move as you dance and add to the overall beauty of what you've created. Plus the ribbons feel nice and tickly on your leg while you dance!

Last, sew or safety pin your morris bells to the right size for fitting around the leg of your child.

Dancing with Your Bells!

You can use this craft to explore the folk music of England or the British Isles. If you stomp, jump or just move your feet you can make your bells jingle or jangle to the beat. Or you can dance to any of your favorite songs.

If you get a chance to see morris dancers, you'll notice that each village or area has developed it's own costumes, customs and variations on the dance traditon. Along with presonalizing your "morris bells", feel free to make up traditions that fit your child's ability or are centered around the way you and your family or friends may want to greet a new season or celebrate an important event of the year!

Award-winning children's performer, Daria (Daria Marmaluk-Hajioannou), has five CDs that have won national honors. She has the most awesome job of traveling the world to sing for kids and peace. Her website, dariamusic.com, was given a 2009 Parents Choice Award for its musical and cultural content. Check out Daria's website for free songs, song lyrics and more fun musical craft activities like this one!

Articles:

Author

Daria Marmaluk-Hajioannou

Show Them You Care!

Amber Bobnar — Thu, 02 May 2013 01:43:16 +0000

Working with children with special needs is hard. My son is disabled and yes, I love him to pieces, but I don't think I could be a teacher. That's not easy work!

Parents who send their kids to school are often in awe of and feel in debt to their kids' teachers and supporting staff, even more so when our kids have disabilities or are medically complex. We have to trust the school to not only teach our children, but also care for and respect our children.

And when the school does a good job, we want to show them that we appreciate it!

Have you considered organizing a staff appreciation day? I asked Catherine Rose about the event she's been organizing for her daughter's school. She gives some tips for other families who want to show their appreciation too!

What does your event look like?

For the past few years, the parents of the Perkins Deafblind Program have organized a Staff Appreciation Day. We work to recognize the efforts of each member of the Perkins Deafblind Program through food and prizes. We organize food donations throughout the day from fantastic companies from the community and set up food tables for the staff.

We also work to assure that we have a raffle prize for each member of the staff (this year that was 140+ employees!) so that everyone goes home with something special.

How do you do it?

Teamwork! We have a dedicated group of parents who start organizing in January for the March event each year. We divvy up the assignments into small teams (2-3 people) for food, gifts and decorating.

The food team asks local restaurants and delis to donate food items and then parents help pick up and deliver those food donations (as well as bring in some home-baked goods).

The gift team contacts other local stores and companies and asks them to donate items that can be given away to the teachers. We then have a prize raffle for the staff throughout the day. This year's presents ranged from Build-a-Bear gift cards to Cabot Creamery Cheese to restaurant gift cards. We have a larger raffle for special items, like wine tastings, an iRobot Roomba or a night at the Copley Plaza Hotel.

Of course, we also need support for setting up in the morning and cleaning up at the end of the day!

Is it a lot of work?

Yes, but you can start small. The beautiful thing about appreciation is the sentiment, so size doesn't matter. You'll find that parents are eager to show appreciation to the team members who support their kids' achievements. They'll be happy to help!

Also, people in your community are generous, too! For this year's event, we asked 400 donors for gifts – we received 100. When looking for prize and food donations, be sure to write a compelling story and reach beyond your direct circles.

It is truly a rewarding day!

For more information about the donors, click here, or to see more photos of the event, visit Facebook.

Please post comments below if you have questions!

Articles:

Author

Catherine Rose

How to Organize a Staff Appreciation Day at Your Child's School

Literacy Made Accessible!

Amber Bobnar — Wed, 01 May 2013 01:06:59 +0000

There's no better resource than a mom to share quality educational tools and these two moms, Casey and Jennifer, are no exception.

They are avid fans of Bookshare, an online library of digital accessible books and reading technologies, which is available free for U.S. students with qualified print disabilities. Print disabilities may include blindness, low vision, a physical disability, or a severe reading disability, such as dyslexia.

Connor's Story

Last Christmas, one of the presents Connor Meadows unwrapped first was an iPad, and within days this seventh grader with cerebral palsy was reading digital books on his own. He didn't have to worry about the book falling or asking someone to turn the page.

"His learning process took on a whole new meaning," says his mom, Casey. "We couldn't download digital books fast enough because Connor loves to read!"

In 2012, Connor's mom signed him up for an individual membership to Bookshare, at no cost, and purchased a portable reading app called Read2Go, which is for Apple devices (under $20 in the iTunes Store). She began downloading free digital accessible books.

"Accessible books enable children like Connor to more easily follow highlighted words on a computer screen and listen to text read aloud. He can navigate through chapters, bookmark pages, and select preferences such as background colors, male or female voices, and size of fonts," says Casey.

The multimodal reading experience for seeing and hearing text read aloud enables readers, like Connor, to take in more complex information in middle and high school. As Connor's reading skills improved, so did his communication.

"After reading with digital accessible books, his sentences got longer when he communicated using his Dynavox and head switch. He is now on his way to a bright future," Casey says.

Thousands of educators and families across America now use the Bookshare library routinely to provide classroom reading assignments, including textbooks, English literature, teacher recommended reading, pleasure reading (such as bestsellers for all ages) and even periodicals. The collections are designed to give students with disabilities more learning equality and timely access to educational materials in accessible formats (DAISY text, DAISY audio, braille, and large print). Today, Bookshare holds over 189,000 books and serves more than 250,000 members!

Finley's Story

Jennifer Pletcher's daughter, just like Connor, has also become an enthusiastic user of Bookshare through the Read2Go app on her iPad.

Jennifer says, "Our six-year-old daughter Finley has LCA (Leber's Congenital Amaurosis). She only has 20% usable vision and reading has been a struggle for her. She gets easily frustrated and doesn't want to read because it is difficult. Finley is a beginning braille reader, so she was stuck in the middle of two worlds. Once we were introduced to Bookshare by her TVI, it opened her world to reading. As she enlarged the font in the technology, she started to love to read. When her eyes were tired, she continued to listen to the books she loved. Now Bookshare is a daily part of her life. We have seen Finley grow and blossom thanks to what Bookshare offers to persons with vision issues. We will be forever grateful."

You can watch this video of Finley reading on her iPad with Read2Go:

And this one of Finley listening to a book with the audio features:

About Bookshare Memberships

There are two options, one for schools and one for families:

Organizational: A school-level membership enables educators to access K–12 textbooks. You can sign up as many teachers or "sponsors" as your school requires to download textbooks on behalf of students.
Individual: Empowers students to download books at school and at home, extending their learning day and encouraging pleasure reading. Watch a demo of the new Bookshare Web Reader, a free feature for members, and view other available reading tools.

Articles:

Author

Valerie Chernek

Connor reading digital books from Bookshare on his iPad with Read2Go.

Finding Free Braille & Audio Books through Bookshare

Looking Deeper to Find the Person Within

Amber Bobnar — Mon, 29 Apr 2013 20:25:22 +0000

More often than not our ability to communicate via speech is the way the world accepts and interprets us.

But what happens if you are unable to?

How does the world react? What accommodations do they make? And more importantly how does the person who struggles to interpret the world around them cope?

These are questions that parents, therapists and anyone working with a nonverbal child might ask themselves. Parents whose children are affected by this condition struggle on a daily basis to achieve what others would perceive to be the most mundane of tasks.

It is a constant battle to decipher whether their child understands the instructions and is able to interpret them correctly because they are nonverbal in their interaction with others.

And more importantly what does the future hold for them? The concerns are for their immediate and long term futures.

Those who do not live through the experience are quick to judge or make assumptions that the child needs to be put in their place or the solution is simply to take a firmer approach. If only it were as simple as that.

People learn differently and experience the world uniquely. A learning technique may work with one child and not with another; this is even more prevalent for those with Autism.

Being able to understand and accept that their interpretation of the world is different and being willing to realize that conventional techniques don't apply is key to a child reaching their full potential. In some instances it is a case of trial and error. What works one day may not three days later!

We are frequently judged on our verbal ability to express ourselves and if this is not satisfactory we are dismissed as a lost cause. Looking outside the box and even beyond it helps us recognize the enormous potential children who can't verbalize possess. Given the guidance they need and equipped with the correct skills the potential for success is limitless. The challenge is finding the right fit.

Because someone struggles to conventionally express their understanding one must not be under the mistaken impression that they are any less capable.

Listening, for example, is a skill that we seldom consider, but has the potential to allow us access and understanding of our environment. Tapping into this skill and using it as an alternate form of communication allows children to express their understanding. You might want to read this article on developing effective listening skills.

The key to any child's success is being able to tap into their unlocked potential.

My challenge to you in reading this is to realize that should you know of someone who cannot speak, whether you are related to them or even work alongside them, your ability to include them, recognize their strengths and help them build on these strengths may be a determining factor that allows them to make a significant contribution to the next generation.

Lesley Potgieter was born with cerebral palsy. Despite her disability she overcame a number of challenges and obstacles and qualified as a primary school teacher. When the first of her two sons was born Lesley took a break from teaching and focussed on raising her family. Being a mom of young boys she realized that there were very few audio stories available for kids. Lesley then started writing stories and recording them in a studio. Her stories, Never-Ending Stories, are now available on CD. You can learn more about Never-Ending Stories on her website or on Facebook.

Articles:

Author

Lesley Potgieter

Communicating with Children who are Nonverbal

NAPVI Conference 2013

Amber Bobnar — Mon, 29 Apr 2013 16:15:25 +0000

The 2013 NAPVI Conference will be held July 19th through 21st!

The National Association for Parents of Children with Visual Impairments, in partnership with Jewish Guild Healthcare, is hosting their international conference covering aspects of raising a child with a visual impairment.

The 2013 Families Connecting with Families Conference will include:

Interactive sessions and panel discussions to address parents’ needs
Networking with other families and professionals
FREE daycare program for children and activities designed especially for teens
Fun for the whole family with special receptions and events

The 2013 Conference will be in Boston, Massachusetts, at the Boston Marriott Newton with a special discounted hotel rate of only $129 per night!

To book your room by telephone, call 1-800-228-9290 and say you are with the NAPVI event. To book online please visit the Marriott website at www.marriott.com/bosnt and enter NPVNPVA in the group code box.

Early Bird registration rates are $85 per adult and $25 per child. Make sure to register by May 31, 2013 to get the Early Bird discount! After May 31st, registration rates are $110 per adult and $35 per child. If you need financial assistance, check out this article on raising money to attend a conference.

To register, visit www.guildhealth.org/family. Registration deadline is June 24th, 2013.

Conferences

Alstrom Syndrome International Conference 2013

Amber Bobnar — Mon, 29 Apr 2013 15:45:12 +0000

The Alström Family & Medical Conference will be held this year in Plymouth Massachusetts, May 9th through 13th. WonderBaby will be there with a table so come by and say hi if you're around!

For more information about the conference and about Alström Syndrome International, click here.

Conferences

Beep Baseball in the News

Amber Bobnar — Fri, 26 Apr 2013 18:19:43 +0000

Have you ever played beep baseball? It's similar to baseball (there are batters and pitchers just like you'd expect), but some of the rules are different. There are fewer bases and the point of the game is to run to one of two large padded bases that will buzz after you hit the ball (you don't know which one will buzz until you've hit the ball). If you get to the base you're safe and you earn a point; if the ball is grabbed by a defensive player before you get to base, then you're out.

Of course, all of the players (except the pitcher and catcher) are blind and wearing blindfolds (to make the game fair). And the baseball beeps!

I don't know about you, but this sounds pretty exciting!

The Boston Renegades beep baseball team were recently on the local news program, Chronicle. Watch as the show explains how the game works and follows players lives off the field:

Learn more about the rules of beep baseball and about the Boston Renegades.

How to Adopt a Special Child

Amber Bobnar — Wed, 24 Apr 2013 18:25:19 +0000

My husband and I talked about adopting for years. Years of waiting for the right time and the right amount of money sitting in our bank account. We felt called to international adoption, but from Africa not Eastern Europe, and we never really considered adopting a child with special needs.

However, because of the example set by some blog friends and a convergence of circumstances, we made the commitment to adopt two older special needs children from Bulgaria. If you're thinking about adopting a special needs child too, here's my advice:

First: Fall head over Heels in Absolute Love

When we first saw the picture of Nellie in the "newly listed children" page on Reece's Rainbow we knew she was our daughter. Not because she looked like us or hit our adoption criteria, but because we loved her immediately. And in times of uncertainty, struggle and frustration, it is this powerful emotional pull that helps keep us driven and focused.

As parents we love and we grieve. Grief is par for the course in parenting. We grieve for time lost and time used; we grieve for expectations that never come to light. Unlike other parents, whose excitement and love might have been mixed with grief when they were surprised to learn that their child is blind, we have known Nellie as a blind person from the start.

Blindness and our daughter were a complete package. Our grief was about the loss of getting to smell her newborn smell, kiss her newborn cheeks, and seeing her take her first wobbly steps. We grieve daily over not being with her to hold her when she cries.

But grief's antidote is love. So step one is always to fall head over heels in love.

Second: Build Community

Smitten as we were for this young girl (and also Marin, a little boy we met a couple months later through our adoption agency), we knew we needed to prepare ourselves and our family for life with her and we were also faced with the task of fundraising the entire adoption. We reached out to our local community and the vast community of parents of children with visual impairments for help.

We joined yahoo groups (like the blind homeschoolers group), searched websites (like WonderBaby.org) and purchased books. We started our Braille library. We began a blog, Bringing Nellie & Marin Home. We immersed ourselves in learning about the possible needs of our newest daughter beyond her needs as an adoptive child.

Community building was imperative for our fundraising attempts. Our local paper did a front page article on our family in the Amherst Bulletin that brought our cause to the masses. Checks came with messages of support for keeping our community a diverse place. Nellie (and Marin) have been welcomed into a community that loves them, even before they arrive.

Third: Wait, Dream and Find Projects

Nellie and Marin are welcomed, but the work is not over. Adoption is all about the hurry up and wait. You work diligently getting your paperwork together and signed and authenticated and then you send it off and wait. You set up an online auction, get donations, pay fees, and fundraise some more. My obsessive nature comes out in down times so I have to have a project or two to keep my sanity.

My current obsession is Nellie's lack of pre-literacy work. My daughter has never been to a zoo and smelled the animals; she's never heard a cat meow or a dog bark. She's never picked out her favorite soft shirt or chosen her special birthday meal.

I have a list of places I would like to take her and books to expand her experiences. Since we are a family of eaters, if I can expand on these experiences with food, I will definitely do it! In my finer moments, I have been known to sew a costume for a child, providing the chance to dress up like his or her favorite book character.

We have an open floor plan on the first floor so our play area is adjacent to the kitchen (where I spend the majority of my time). We already have a rug that delineates her play area so she has some tactile assurance while she explores her world. We have her bed without a toe-bumping frame in our room to attend to her nighttime needs and we purchased a bureau with easy-opening drawers that were not too deep.

Fundraising and inspiring others to consider adoption is an ongoing task. I maintain our blog and my Facebook page. Our local community has donated many gift cards and certificates that we've auctioned off online. We keep our story alive in people's minds and provide a model of what an adoptive family looks like. If we can do it, so can others!

One Step at a Time

Adoption is not for the faint of heart and no one would call it easy. But for our family, fulfillment is in loving and giving. Nothing else matches that.

Have faith, take it one step at a time, and adopt your own special kid. It is all so worth it.

Articles:

Author

Kimberly Schildbach LMHC, M.Ed.

Nellie is awaiting adoption

Advice from a Family Working to Bring Two Children Home