Future Reflections       Special Issue on Low Vision       PARENTS' PERSPECTIVES

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Finding Our Way with Grace

by Anna Wallis

From the Editor: Many parents and educators have written about raising and teaching a child who has low vision. Far less has been written about the needs and potential of low vision children who have additional disabilities. In this article, Anna Wallis recounts her journey to ensure that her daughter, Grace, who is legally blind and has Down syndrome, will become literate. You can follow Anna's blog at <http://fromtheheart-anna.blogspot.com>.

Grace Wallis counts a series of toy animals.When I was invited to write an article for Future Reflections, my first response was, "Absolutely not!" I felt I had no expertise to offer the parent or teacher of a child with multiple disabilities, one of which is visual impairment. How could I be of help to anyone else when we are so new to this challenge ourselves? Upon further soul searching, I realized that the story of our daughter's diagnosis and our subsequent journey might speak to others and help them find their way.

Our daughter, Grace, was raised in an orphanage in Ecuador until she was four and a half years old. When she was three, the orphanage had X-rays taken in an attempt to figure out why she wasn't walking yet. Today when I read those reports, I know that her poor muscle tone wasn't only the result of her Down syndrome. I think that the biggest roadblock in her development was her caregivers' lack of knowledge about how best to help a child with visual impairment. When a child has multiple disabilities, it's like putting together a puzzle. As parents, we have to sort many variables and put them together to form the whole picture.

When we met our daughter, it was evident that she needed a form of communication right away. She had been raised in a Spanish-speaking environment, but she had no means to express herself in any language. We immediately started to teach her American Sign Language, using Signing Times videos set on the Spanish track. These videos were perfect because they used fun songs, bright clothing, and actual concrete objects. I believe that signing has been Grace's bridge to developing spoken language. She still struggles with speech, but with ASL she can help her family and friends know what she wants and needs. Her ability to sign eliminates frustration and anxiety for all of us (most of the time, anyway). In addition, ASL takes the pressure off Grace to develop speech in a hurry. The last thing our kids need is more stress and demand for performance!

Another great tool for our children with low vision and multiple disabilities is the tactile communication board. Items are placed on the board with Velcro so they can be seen and/or touched. If vision allows, a picture system, picture exchange communication system or visual support (PECS),  or large photographs of people and tangible items can be used. We also have found a number of helpful apps for the iPad. We downloaded a free version of urTalker Pro that has a calendar. I take photos of people and places and use them to set up a schedule on the iPad. Grace can easily make it larger or smaller to see what is pictured while she listens to recordings of me saying, "Today we are going to see Mrs. Cynthia at school," or "We are going to play with our friend Julie." I also have seen some great products from the American Printing House for the Blind (APH). We utilize many approaches so Grace can be exposed to a variety of communication methods. Together we figure out what works best for us.

Grace's daily schedule with tactile symbolsOnce we arrived home with Grace, we started getting to know one another. In the adoption world we call this bonding. All children, adopted or not, need to bond with their parents or guardians. As we deal with the ups and downs that go along with multiple disabilities, I like to think of our bond as the superglue. I needed to understand what made this little one tick, since she couldn't communicate with words. When you strip away all of the diagnoses and labels, I still have a beautiful child, and I want to help her reach her fullest potential!

Over time I learned that Grace tires very easily. She will sleep twelve hours at night, then need a two- to three-hour nap in the afternoon. This schedule would make learning difficult for anyone. We also have found that it's important for us to be informed about how diet and medications affect her, especially since she can't explain to us how she feels. For instance, I have learned to make sure she is rehydrated first thing in the morning. Sometimes she displays behavior that indicates she is dizzy or hypersensitive to noises, and I feel that it has to do with her medication. I have learned that some medications can cause vision disturbances and actual eye damage, so I'm alert to that as well.

While we were bonding with Grace, I did research on teaching children with Down syndrome. I found a number of great books from Woodbine House Publishers. I think that many of the books I have read about Down syndrome also would be helpful to parents of children with other delays. They cover topics such as large and fine motor skills, communication, math, and reading.

Grace sits in a wagon holding a lollipop.Encouraged by my reading, I found countless ways to help Grace learn and have fun at the same time. While we spent time outside playing, I told her about her environment. We have blocks to build with, simple puzzles, Play-Doh, a play kitchen, and dolls for pretending. We take trips to the park so Grace can use her muscles and get fresh air. We also have a large calendar with pockets, the kind typically used in classrooms. The names of the months are written in bold, easy-to-read letters, and we place a number in the pocket each day to work on one-to-one correspondence and number recognition. I am adding Braille to the calendar now, and Grace's TVI recently gave us a Braille calendar from APH. Grace also has a tactile daily schedule made by her summer TVI, using Velcro and tangible items so she can see and feel what she might do that day.

After we brought Grace to the US, we tried to do away with what we thought were bad habits she had developed in the orphanage from not having the right glasses prescription or not wearing her glasses all the time. Instead of using her eyes to look for an object on the table, she would feel for it with her hands. I'm sad to say that in our ignorance we kept telling her to use her eyes. We thought that her glasses gave her 20/20 vision, and we wanted her to use her sight. We finally realized that her "bad habits" were her way of using her perfectly good sense of touch plus her other senses instead of her limited vision. Actually, we should have praised her for using her hands the way she did. Now she needs to be encouraged again to use and develop her sense of touch and not to depend on her eyes as we had tried to teach her.

You see, at that time we had no idea that Grace is legally blind. I only knew there was a huge gap between her chronological age and her developmental age. In hindsight, maybe it was a good thing I didn't know that the glasses failed to correct her vision. I exposed her to many things I might have thought she was incapable of doing because of my preconceived ideas of what a blind or visually impaired child can do.

In the summer of 2012 our daughter developed epilepsy. The medications used to prevent the seizures made her very ill and caused her to regress in many areas. Over the course of several months we were able to shift her to a new medication, and she started to regain the progress she had made earlier.

In September we took Grace to visit an ophthalmologist at Emory University in Atlanta. It was then that we learned our daughter is legally blind. Of course, the doctor didn't use the word "blind" with us. She just said that Grace's vision is 20/200. She felt that many of Grace's eye conditions--ambliopia, strabismus, and nystagmus--developed because her congenital cataracts weren't removed until she was a year old, and because her glasses weren't worn as needed while she was in the orphanage.

The news was devastating for me. I had begun to teach Grace to read, using flash cards with words printed two to three inches high, as directed in the book Teaching Reading to Children with Down Syndrome by Patricia L. Oelway (Woodbine House, 1995). I had thought she was being resistant when she couldn't read words she knew from the flash cards if she saw them in a book. In reality she couldn't read them because the font was too small.

I grieved for weeks, if not months, before I came to terms with this new diagnosis, which came only three months after Grace developed epilepsy. I realized that Down syndrome, epilepsy, and legal blindness do not define my daughter. They are the names of disabilities that aren't going to change who she is or the purpose set for her in this life!

Once I managed to get my bearings, I started going through the evaluation process to get drop-in services for Grace, since she is a private school student. We don't have a local lighthouse for the blind, and the only assistance we received from the state Division of Blind Services was an outdated pamphlet highlighting some special education laws. Once a child reaches school age, all services are funneled through the public school in our county.

The evaluation process for Grace stretched over nine months. We are still trying to find our way, slowly but surely. All I can say is that it's a very frustrating process.

Interestingly, I have learned that children raised in an orphanage and adopted when they are older often have sensory processing issues. The same is sometimes true for children who take anti-seizure medication and for children with visual impairments. I have been studying many websites about sensory processing disorders to learn as much as I can. Grace doesn't like to be spoken to loudly. She doesn't like being touched or helped, and she will fling her arm at anyone other than her father or me who doesn't keep set boundaries. She is also very tactually defensive. For this reason, her TVI isn't sure Braille is a good option. I tend to disagree. With 20/200 vision, our daughter has one-tenth the sight of someone with a visual acuity of 20/20. She has perfectly good fingers. Why should I force her to use a sense that only works at 10 percent rather than another that is 100 percent functional?

Braille is literacy. I often hear that Braille is difficult to learn, but how many sighted students struggle with reading? Learning to read is hard in any medium. It takes time and patience. First we have to learn that symbols equal letters. Then we learn that letters represent sounds. We learn that combinations of symbols make blends, and that there are exceptions to the rules. If we quit thinking of Braille as a code that is hard to learn and remember our younger years of learning to read print, we'll recognize that the learning process is much the same for both media.

I believe that students learning Braille are at one great disadvantage. Print is everywhere, but I only see Braille on restroom signs, ATM machines, and elevator panels. Furthermore, most emergent readers have parents, siblings, and friends who model reading. Emergent Braille readers seldom have this level of support.

I think when I explained to Grace's TVI that I don't care if my daughter doesn't fully master Braille until she graduates at twenty-two years of age, she started to realize that I am committed to Braille as the form of literacy my child needs. If we only teach her to use print, she could lose more vision and be rendered illiterate. I know I am fighting an uphill battle. Because she has multiple disabilities, her capacity to learn is perceived differently. Nothing will change my convictions. I am committed to literacy. For Grace, that means learning to read large print for when it is practical and primarily focusing on learning Braille.

I have found the greatest source of help in organizations such as the National Federation of the Blind (NFB), the National Organization of Parents of Blind Children (NOPBC), and the Florida Parents of Blind Children (FLPOBC). It is wonderful to be in touch with parents who are walking the same journey. Most are willing to share their experiences and to offer a listening ear. I also belong to great groups of parents and teachers on Yahoo and Facebook. The group members have far more experience than I do, and they amaze me with their heartfelt concern over each family and each situation that arises. Being the parent of a child with disabilities can be lonely, but that loneliness isn't inevitable. Reach out to other families who are walking the same path, either just taking their first steps or well along their way. You won't regret it.

We are constantly teaching Grace, but at the same time she never stops teaching us. From our daughter Grace we have learned more about grace than we imagined possible. Every day she teaches us more about the grace of living and loving.

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