Raising a Child Who Reads with Her Hands

Raising a Child Who Reads with Her Hands:

How Our Daughter Achieved Literacy Despite a Dual-Sensory Impairment

By Graciela Tiscareño-Sato

As the nation recalls the events of September 11th, 2001, I reflect on something entirely different. Twelve years ago this month, I watched the horror unfold while pregnant in a hospital bed trying to keep a baby barely at 24 weeks gestation, alive and inside me. Ten days later, a full 100 days before her New Year’s Eve due date, my daughter Milagro entered the world as a 25 ½ week preemie, weighing in at one pound and two ounces.

I’m the mother of a literate little girl who is blind, with a hearing impairment and an avid reader of Braille books. Her birth story and 137-day hospitalization is detailed here. My June blog post about her first experience as a public speaker (5th grade advancement) is here. In between those two days on the timeline are many stories, tears and laughs; here I’ll focus on how we helped her achieve literacy at home and at school.

Future View and Surrounding Myself

First, my husband and I looked for examples of hope for her future. I detailed what I did before her first birthday here. While she enjoyed infancy, we began to study the Braille code. We played a weird version of Scrabble together with a set of handmade wooden tiles from Mr. Arnold Dunn in St. Petersburg, Florida, each block with a Braille letter to memorize. Notice I used the word “code,” because to be literate in the language of Braille as a sighted person, you only need to learn which combination of six dots represents which letter, number, contraction, symbol (and later musical notes and values). There’s no need for my husband and me to read Braille with our fingertips; that’s a skill we left for Milagro to master.

Next, I met the mother of a college student who was blind. Elizabeth Phillips, who was shaken, blinded and nearly killed as an infant, was preparing to enter Stanford University. Her mother Mary Beth Phillips showed up in that Berkeley café one morning with an armful of baby board books from Seedlings. She said, “Get on their mailing list today, because you’re going to start reading to your daughter tonight with these books, just as you’d be doing if she wasn’t blind.” Read Elizabeth’s remarkable story here in People Magazine.

What I want parents of children with disabilities and special needs to take away is this: as soon as possible, put your personal grief on the shelf, go out for coffee with a parent who has walked the path you’ve been forced to take, and put your energy into your child’s literacy, education, and future. The sooner you do it, the better for your child. Sadly, I’ve met way too many teens who are blind and who still don’t have a cane because, in the words of one poor 17 year-old man, “My parents didn’t let me have a cane because then it would be really obvious to them and the world that I can’t see.” I’ve heard the same about parents not wanting their child to learn Braille. We on the other hand, couldn’t wait to each learn our third language and to prepare to be our daughter’s first Braille teachers.

Thirdly, I decided to educate myself through the writing of others and to always be surrounded by books for my daughter. The National Federation of the Blind publishes a magazine for parents and teachers called Future Reflections. It’s a must-have free resource I highly recommend to connect with like-minded, forward-thinking parents and educators. “Six Things you Can Do at home for your Blind Baby,” is one of my favorite articles that I’ve contributed to share activities and resources we relied on to prepare our daughter for preschool. An additional depository of Braille books, digital Braille books, and alternate formats for kids who are auditory learners (i.e. dyslexic but not receiving services in a stubborn school district) is Bookshare. They have over 200,000 books in accessible formats for children with print disabilities and sign-up for students in K-12 is free.

Advocacy

The true and legal responsibility, per federal and state laws, of teaching a child who is blind how to read, write, and meet educational standards, lies with the Local Education Agency, the school district. But without informed parental advocacy based on knowledge of your child’s federal and state educational rights, it’s not likely to happen. Here’s what I mean in an advocacy article published in Future Reflections magazine. It details (and names resources) how we became effective, forceful parent advocates to ensure our daughter would learn to read, write, and become as independent as possible considering her dual-sensory impairment. This article should be read by all parents raising children with physical or learning disabilities, preferably before the child is three, but ASAP.

Technology to write and read in Braille

The school district must provide adaptive technologies for your child when there are goals in the written Individual Education Plan (IEP) that require them as support. No goal? No technology. The technology that my daughter has used through the years I will simply list because that’s another set of articles I could write. There are YouTube videos you can watch if you’re curious: Mountbatten Brailler, the BrailleNote (her current favorite tool with refreshable Braille display that she’ll use into adulthood), a slate and stylus (the equivalent of pencil and paper) and her “Long Braille Cell” for learning new words as we travel around.

Braille is Beautiful

Those who know me have heard me say “Braille is Beautiful.” I’ve forgotten where I first heard that. Watching my daughter delight in reading a book or the latest issue of Spider magazine is like magic: bumpy dots pass under her trained, sensitive fingertips, her memory quickly accesses and processes what words, numbers, punctuation marks they represent. She reads aloud to me with voice inflections, emotion, and laughter – beautiful magic.

I want you to meet my daughter Milagro through video, because it’s unlikely that you’ve ever met a blind child (it’s an extremely low incidence disability), much less a child who is blind and literate. Here you go, mijita Milagro:

I trust you see the confident, happy, literate young lady she has become. In early September, she started middle school at the California School for the Blind, a terrific college-like campus just 23 minutes from our home. Her teacher of the visually impaired (TVI), a highly specialized educator who has trained in teaching Braille, happens to also be a lifeguard. My daughter is now swimming twice a week for PE, causing her two younger siblings to say, “No fair, I wish I was blind.” Sigh…

Even though my daughter is now a commuter student at the age of 11, taking a cab with two other students in the area to their campus in the next city, I’m ready for this new phase. I also know she’s ready, because every day this summer she kept saying, “I’m so excited for the California School for the Blind.”

I’m excited to see how much more she will learn in the years ahead. My husband and I take credit for the decision we made years ago to insist that her federally-guaranteed educational rights be enforced. We ensured that every educator on her huge IEP team had the highest expectations of her and that those who didn’t were removed. It’s been an extraordinarily challenging twelve years, but Milagro’s love of reading and her voracious appetite for writing on her BrailleNote, is truly the most gratifying reward.

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Graciela is a military veteran and Chief Creative Officer of San Francisco area publishing and multicultural marketing firm Gracefully Global Group LLC that she founded in 2010. She’s a publisher and public speaker by day, mother of three always and blogger and business owner by night. In her pre-motherhood life, Graciela graduated from U.C. Berkeley and traveled the world as an aircraft navigator onboard the U.S. Air Force KC-135 refueling tankers. Her military aviation career is the basis of her first bilingual children’s book (in a planned series) titled Good Night Captain Mama / Buenas Noches Capitán Mamá. Read her full bio here.

Tips for Teaching a Child with Down Syndrome to Read

Eliana T daughter

The following is a guest post by Eliana Tardio, publisher of ElianaTardio.com and mother of two children with Down syndrome.

Years ago, it was hard to believe that children with Down syndrome would be able to read. Thankfully, times have changed. Now, it’s great for me to share from my personal experience that my son who is 9 years old is already reading and my daughter who’s 6 has received an “Emerging Reader” award this year.
Both of my kids have Down syndrome and if you ask them, I guess they would say that growing up is an awesome experience, including learning to read. There are 3 principles that guide my path as I teach my kids anything new, but especially when teaching my children with Down syndrome how to read:

1. Respecting their unique timing

Something that I have always empowered my kids with is a celebration of their own abilities. I’ve taught them to be proud of their achievements without comparison. Respecting their own timing and letting them learn at their own pace tells them that we appreciate their effort and that life is not measured by results but for our desire to always do our best.

2. Teaching them to enjoy the path of learning

Learning should never be forced or achieved under pressure. Learning is a joy, and that’s a gift that we should be able to share with our kids; teaching them to enjoy the path of learning and feeling able to open their world to the letters and words that will eventually come.

3. Learning that life is not a competition

Another great lesson that comes when raising a child with special needs of any type is that life is not a competition. Learning is not about collecting A’s at school or trying to demonstrate that your child is better than anyone else’s. This is all about providing your child with the tools he may need for developing the most of his abilities, no matter how limited they may seem, and not comparing with others.

Eliana T daughter

How to teach them to read:
As with any other child, your child with special needs starts learning as a baby. You can follow these steps to familiarize him or her with literature.

  • Read to your child in utero.
  • Choose a favorite book and read it for him over and over again.
  • Give him special time to listen to you read while he’s sitting in your lap and following the pictures.
  • Promote his interest by using cardboard books that he can manipulate.
  • Go for simple-looking books in the beginning. Black and white books are sometimes less overwhelming, allowing your child to focus his attention more easily.
  • Single words books are great for association and for learning by repetition. Simple is sometimes better.
  • Provide her with subjects that are interesting for her. The same as any other child, yours will get excited and motivated for the characters and plot lines they enjoy most.

Something important to keep in mind when you raise a child with Down syndrome or speech delays of any kind, is that the speech errors they make may create insecurity in them. They may be shy to share what they know or be able to express much less than they understand. Be patient, reward them often, and celebrate every bit of progress.

My son reads stories for my daughter at bedtime, but used to be very shy about demonstrating his abilities at school. Nobody believed me when I said he knew how to read until I taped him and sent a copy to his teacher. The teacher set up a very special moment for him and played the video for the whole classroom! Ever since then, he’s been unafraid to use his voice in front of others. His language is still developing but feeling that people celebrate his efforts has empowered him to keep reading while showing off all that he’s able to do.

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Eliana Tardío, is the mother of Emir & Ayelén, both with Down syndrome. Eliana works as a Family Resource and Marketing Specialist for the Early Intervention program of Southwest Florida. She writes for several online publications about her experience as the Latina mom of two kids with special needs, providing what she calls “the most important advice for anyone: Hope in love.” Named as one of the Top 100 Moms Bloggers by Babble.com, and one of the 7 Most Inspirational Latina Moms by Café Mom, Eliana’s advocacy work has garnered her many awards, not only in the USA, but around the world. http://www.elianatardio.com

Reading and Children with Autism

The following is a guest post by one of L4LL’s original co-founders, Lisa Quinones-Fontanez, and is part of our series on literacy and children with special needs.

Before my son, Norrin, was born, I knew that I wanted to emphasize reading. There were nights during my pregnancy when I sat in his room, rocking in the rocker and reading Goodnight Moon. I remember looking around the room, rubbing the swell of my belly and imagining what motherhood would be like.

Norrin was born and reading became part of our routine. Night after night, day after day. But even though I read every night, at two-years-old, Norrin still had no language. After he was diagnosed with autism and we started working with therapists and special education teachers – reading remained the constant in our hectic lives.

One of the therapists suggested we read the same book, three times a day for a month. The book was Brown Bear, Brown Bear, What Do You See? And that’s exactly what I did. I read it in the morning, when I came home from work and before bed. I pointed to the pictures and asked questions. Norrin still had no language but he could understand. I’d use my hand to guide his, helping him point to pictures and talking about the different animals and colors.

It’s been five years since Norrin’s autism diagnosis and reading is still a priority. It’s how we best connect. I read every night. And now that Norrin has language and can read at almost grade level, we take turns reading.

Sometimes introducing new books can be a challenge, since Norrin often wants to read the same book. Here is what has worked for Norrin and me:

  • We read two to three books a night. One I pick. One Norrin picks. And sometimes a book I’ve never read to Norrin before.
  • Norrin isn’t always interested in my book selections; which is why I read those first. I like to build up to the one he wants. For the most part I’m successful.
  • When choosing books for a special needs child, it’s important to consider their reading level and personal interests rather than their age level.
  • I buy books that I know will appeal to Norrin. For example, since I know Norrin enjoys Dinosaurs Love Underpants, I purchased another book called WhenDinosaurs Came with Everything.
  • I tend to pick books with bright pictures and few sentences per page. If the text takes up most of the page, then I know it’s probably not the right kind of book Norrin will enjoy. (Not now anyway.)
  • When introducing a new book, I read it every night for about a week or two. Even if Norrin shows no interest. Even if he’s running around the room. I like him to hear it and eventually he gets used to it.
  • Books with CDs are great. I like to play the CD and let Norrin look through the book.
  • Interact while reading. I love asking Norrin questions when I’m reading a book. If Norrin cannot guess I take his hand and point to pictures.

Ultimately, it doesn’t matter if you read one book or ten – all that matters is that you are reading with your child.

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Lisa Quinones-Fontanez is a secretary by day, blog writer by night and Mami round the clock. When Lisa’s son, Norrin, was diagnosed with autism in May 2008, she found herself in a world she did not understand. In 2010 Lisa founded the blog AutismWonderland. AutismWonderland is an award winning blog that chronicles her family journey with autism and shares local resources for children/families with special needs.

In May 2013, Lisa graduated with a Masters of Fine Arts in Creative Writing from The City College of New York. She is also a contributing writer at Parents.com and Babble.com. AutismWonderland is #10 on the Babble 2012 Top 30 Autism Blogs for Parents. And at the 2012 LATISM National Conference, Lisa was recognized as the Best Latina Health Blogger.

In between work, blogging and advocating for Norrin, Lisa is also working on a historical fiction novel A Thousand Branches. A chapter excerpt (The Last Time of Anything) from A Thousand Branches received Honorable Mention in Glimmertrain’s Family Matters October 2010 competition.