One Mom’s Article

 

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:

as preschooler descending escalator with her cane.

reading a poem to class in kindergarten

local news story about our attitude in raising her as independent person

Local story with video about a day in the life of a blind child

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.

—————————————

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.