Future Reflections         Special Issue: Blind Children with Additional Disabilities

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by Michelle Hess

Rachel is seated on a tandem tricycle with her hand on the bell.From the Editor: In 2009 the NFB of Illinois came to know Rachel Hess when she took part in FreedomLink, a transitions club for blind teens. In this article Rachel's mother, Michelle Hess, shares her experience as the parent of a blind child with many additional disabilities.

"What do I possibly have to say?" I asked myself when I was invited to write an article about being the parent of a blind child with multiple disabilities. As a busy mom, I hadn't put my ideas down on paper in years. But as I thought about it, I realized that writing about my experience was a project long overdue.

Our daughter, Rachel, is blind and has many other physical and mental challenges due to a rare genetic disorder called Hurlers syndrome. As I think of all the difficulties we have faced over the years, one of the most aggravating challenges for me is the dreaded medical office form. If your child has multiple medical issues, I'm sure the scenario is familiar to you--you're in a new physician's office and an innocent young receptionist hands you a five-page NEW PATIENT MEDICAL FORM. You want to scream, "You have got to be kidding! Do you know how many of these I have filled out over the years?" Instead you smile back, take the form, and prepare to unload a lifetime of grief onto the paper.

For the parents of relatively healthy children, the medical form is quick and routine, but the rest of us have a lot of explaining to do. I have to list Rachel's underlying diagnosis, the problems that accompany the underlying diagnosis, and all the stuff that may have occurred as a result of surgeries that didn't go as planned. Then there are the medical problems that don't really fit the underlying diagnosis but "just happen to some kids sometimes," as one doctor put it. Finally comes the "OTHER" box. Within this tiny space--all of one miniscule line--I am asked to pile years of my daughter's life. Usually I have just enough room to write, "See attached." I hand in a packet of medical information that feels as though it weighs thirty pounds. If you're a parent in the "OTHER" Box Club, you probably have a knowing smile on your face right now.

Though Rachel is nineteen, she still sees a pediatrician. Recently his office started a care coordination program for children who have a chronic condition lasting more than one year. I filled out the forms for this program and received a neatly printed summary of the information I had sent them. It listed eighteen diagnosis codes for my daughter. Eighteen! The sheet sent my husband and me reeling. Of course legal blindness was one of her diagnoses, but there were seventeen more! So when I asked myself if I am qualified to write about being the parent of a blind child with additional disabilities, obviously the answer is, "Yes!"

Years ago I attended a support group for parents of visually impaired children. At first I felt a sense of oneness with everyone in the room. When people started to talk, however, I realized that in some ways our experiences were very different. One mom said that her child was using a screen-reader. When I asked her how he was learning to use it she replied, "I have no idea. He just tools around and figures it out by himself." I felt a heaviness in the pit of my stomach. My daughter cannot learn complicated processes on her own. She needs the information delivered to her in small, manageable pieces. Also she needs constant reinforcement to help her retain and recall the information she has learned. When she learns a new skill she can lose it again if she doesn't practice consistently at school and at home.

Rachel enjoys writing with her Perkins Brailler.Most kids, blind or sighted, do a lot of inferential learning. They generalize from one experience to another and build a strong concept of cause and effect. Rachel is a very concrete learner. She has a hampered ability to reason and predict, complicated by problems with her short-term memory. When we read together I stop often to talk about what we are reading. She is an excellent decoder when she reads Braille, but unless we stop and talk she has very little comprehension of the passage she has read. Nevertheless, she is a hard worker and very determined to learn. If something is difficult, she keeps trying until she masters it. Teaching her is a joy.

As I have said, Rachel's disorder regularly sends us to physicians' offices. We monitor her eyes, ears, heart, VP shunt, spine, and neurological status on a yearly basis, and her endocrine and dental issues more frequently. Recently we made several trips out of state to see the orthopedic surgeon who focuses on the hips and knees of Hurlers patients. To overcome the boredom of long waits we do a lot of reading and singing. Yesterday Rachel gave a mini-concert to the folks in our orthodontist's waiting room. I tried to quiet her, but people noticed how pretty her voice is and insisted that she continue. Rachel, you go, girl!

Rachel has endured three umbilical hernia repairs, a tonsillectomy, a VP shunt placement, a bone marrow transplant, bilateral carpal tunnel surgery, two spinal fusions, four hip surgeries, and more. Twice she has been in a hip spica cast. Last year she underwent surgery to put her hips and knees in better alignment and to help make her legs more equal in length. I remember being in the PACU (Post Anesthesia Care Unit, for those lucky enough not to know) after the operation. My husband and I were standing over Rachel's hospital bed and holding her hands. For some reason we asked the nurse, "How many surgeries does this one make?" She looked at Rachel's folder and responded, "Seventeen."

We have both been present and lucid for each of Rachel's surgeries, but when my husband heard that number it hit him hard. I saw the tears well in his eyes. Suddenly he looked sick and excused himself from the PACU. I knew he was going somewhere to scream or be sick.

Each of Rachel's surgeries has been a setback for her and for our family. All too often she builds new skills, only to lose them as she spends weeks or months recovering from yet another operation. We are constantly adjusting and readjusting. For example, we spend a lot of effort stressing independence skills. Then suddenly safety trumps all else, and we hear ourselves warning our child not to take one step out of the shower without our presence or so help us! Many of you know exactly what I am talking about.

People sometimes ask us, "How does your family handle all of this? I don't think I could do it." Of course having the love and understanding of relatives is priceless. Our church community has also been supportive. Our network is huge. Countless school teachers, home-bound instructors, school therapists, private therapists, teachers of the visually impaired, orientation and mobility teachers, activities of daily-living skills instructors, a wonderfully patient piano teacher, in-house caregivers, and dedicated physicians have been invaluable to us. All of these friends, relatives, and professionals belong to our "Angel Hall of Fame." Connecting with people who have similar experiences is critical. Lots of our friends have kids with special needs. Talking to any parent of a child with disabilities is great. Occasionally I turn to the "big guns" and get on the phone with another Hurlers mom somewhere across the country. It is refreshing to talk nonstop with another mom for four hours! Without apologies we go back and forth about our kids and what is happening medically. It really helps to talk to someone who is walking the walk with you.

Hard as Rachel's medical ordeal is for me and my husband, she is the one going through the worst of it. We take her lead. She handles it all. If she can endure whatever is happening at any given moment, who are we to come undone? She is the emotional glue holding our family together.

Thanks to her O&M training at school, Rachel likes to explore the world, long white cane in hand. She loves shopping malls, touching and smelling everything in them. Hot cocoa at Starbucks is one of her favorite treats. She loves to visit museums and go to concerts in downtown Chicago and in the suburbs. She enjoys theater productions of any kind.

Rachel is involved in a rich variety of activities in our community. Currently she is taking an acting class through an organization called Flourish in the Footlights. Flourish is dedicated to the development of all individuals. Rachel's class is taught by a team of special-needs professionals and professionals in the performing arts. This year the program will culminate in an onstage production of Snow White.

Rachel is also active in church. The pastor encourages all the youth members to express themselves artistically in the venue of their choice. Rachel has participated in skits and played piano during the worship service. She is also involved with NWSRA, Northwest Special Recreational Association. She has taken piano lessons there and for years has performed in the annual showcase.

Recently we found a tandem tricycle that works very well for Rachel. Called the Adventurer Tandem, it is made by Freedom Concepts. Singing, with the wind in her hair, Rachel can be seen cruising down the streets of our suburban community of Arlington Heights. As she wheels by, people smile and shout, "Cool bike!" Fortunately we have a trailer that can haul this large tandem to the bike trails in our local forest preserve. We also have taken it up to Door County in Wisconsin, where we cycle together as a family on the winding trails of Peninsula State Park. Rachel loves to go on vacations. For our next family getaway we plan to visit St. Louis, where we will check out that famous arch and sample the area's fine dining.

Before she goes to bed at night I often tell Rachel, "You are the coolest person I know. If I ever end up shipwrecked on a desert island with someone, I want that someone to be you." Rachel's upbeat attitude inspires everyone in our family. She cares about others. If you are sick she asks you how you are doing. She may have difficulty remembering things, but she holds onto what's important.

That "OTHER" box is tiny, and there is so much we have to cram into it! The box doesn't give us room to write about all the things we are thankful for. Did I forget to mention that Rachel's last surgery managed a miracle? It removed one of her diagnosis codes! Yes, 755.3, "lower limb length disparity," has completely vanished from the paper.

Some day I'd like to host a big party for all the parents in the "OTHER" Box Club. We can all get together and celebrate our personal joys. Let's build a bonfire with our truckloads of paperwork. We'll dance around the flames and hug our kids, and scream a little, and sing. Let's do plenty of singing!

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