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Homeschooling a Medically Handicapped Child

By Marsha Iddings
Printed in Practical Homeschooling #10, 1995.

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I had planned to homeschool my children from the day our first bundle of joy, Erin, made her smashing debut into the world (she’s now 10!). But, for a while, I felt the Lord had something else planned for our second-born.

Homeschooling an above-average, intelligent, and overly mature child is one thing, but our second child threw a wrench into our homeschooling works.

Matthew was born with a dwarfing syndrome that left him unable to walk, talk, or even breathe on his own. He was hospitalized most of his infant and toddler years. Matthew was ventilator-dependent for four years, which caused the formation of scar tissue that has obstructed his ability to vocalize. He has always had poor vision due to the prolonged and excessive amounts of oxygen he was exposed to as an infant. He has severe hearing loss in both ears and limited hand and joint function. But, in the midst of all these handicaps lives a sweet and very intelligent child.

Homeschooling was an extremely difficult task, to say the least. First, we worked with professionals to developed an augmentative communication system (a picture-based communication system) that enabled Matthew to express his desires without having to use his voice.

When Matthew became less medically fragile and could be off of the ventilator for brief periods of time, we began to expand his world beyond the four feet that the ventilator and oxygen tubing would allow.

We began to take him outdoors—at first only briefly, to touch a flower or a tree or to feel the soft fur of a kitten. When he could handle it, we took him for longer periods. We’d go out in the wind and rain. We’d feel the warm sunshine and hear the birds sing. We even went outside in a snow storm and built a snowman on his wheelchair tray. Slowly, the wonders of nature and life were being revealed to him.

Matthew also began working on the computer. His sister Erin loved to help. She taught him how to match colors, shapes, and opposites using an auxiliary board for the computer called a Unicorn board. This allowed us to bypass the normal key functions and program our own operations. By providing a keyboard overlay with simple yes/no or same/different sections, Matt could choose the correct answers with a simple touch.

I supplemented this program with physical and speech therapy consultations and occupational therapy visits at our home.

Our program, although sometimes difficult to juggle with another child, was going smoothly. I was realizing my goal of homeschooling.

Then one day Matthew’s trademark bright, loving, and smiling disposition, altered drastically. He had no fever, no obvious problems, but he became increasingly agitated and fussy. He wouldn’t work at the computer and would cry when given one of his favorite books. I knew something was terribly wrong.

The doctors determined that his retinas were detached. After three surgeries, they gave us the sad news that they could not restore his vision. On top of all his other handicaps, Matthew was now blind.

As Matthew’s world fell out from beneath him, so did our homeschooling program. His only means of communication was taken away, along with his favorite pastimes—computer work and books. His very limited world had suffered yet another restriction. To make matters worse, Matt would temporarily regain his sight after each surgery, only to be plunged back into darkness when the retinas tore away again. Matthew withdrew into a deep depression and refused to be comforted. When he began to refuse food, we were driven to force-feed him. We had no idea how to reach our son.

Finally, through much prayer and constant love, Matt started to open up. He began to respond to music and to our touch. He decided that life was still worth living.

After that the crisis had passed, I struggled with the idea of sending my most vulnerable child to public school. What else could I do? All of our programming was reliant on Matt’s sight. I now felt unequipped to help our little boy. We decided to send Matt to the Special Education Program for one year, trusting that the “specialists” could teach him another way to communicate and learn life skills better than we could.

Sadly, I was the only one who discovered anything that year. The biggest lesson I learned was that the public special education system was as ill-equipped to educate my handicapped child as I had been. They hadn’t the personnel, time, or specialized knowledge needed to help Matt with his education.

As that fact slowly dawned on me, I began to educate myself on my child’s conditions and on child development in general. I spent hours researching support groups (something I had never before heard of), books, resources, therapies, teaching techniques, and any other material that would give me information on educating a multi-handicapped, medically fragile child.

I found that the reasons for homeschooling my other children applied to my special child as well, if not more so. I decided that God had intended me to homeschool all my children, and with His help I would do so! However, I found the same resounding question echoing in my mind as when I’d decided to homeschool Erin: “Where do I start?”

I answered that question by asking myself other questions? What did I already know about Matthew’s handicaps? How did they affect his ability to learn? Who could I go to for more information and support? Where did Matthew need to go, developmentally speaking, and what were the steps to get him there? And lastly, how could I implement this type of program and fulfill all my obligations to the rest of my precious family? I gathered more information and applied what I was learning to Matt’s educational program.

I started with the hand-over-hand method, which was actually a carry-over from his public school days. This system forced Matthew to explore new textures and environments or to accomplish new tasks by using his sense of touch. It was failing, and Matthew was developing autistic tendencies. In my ignorance, I increased my attempts to get him to understand these concepts, all the while pushing him further away.

God is faithful. He knew I needed wisdom. I certainly kept asking for it! He answered by placing a VIP Newsletter in my hand from The Blind Children’s Fund. The newsletter included an article written by Dede Goodrich about Dr. Lilli Nielsen, who had 30 years of experience educating blind children and adults. In her 25 years at Refsnaesskolen National Institute for the Blind in Denmark, Dr. Nielsen had seen repeatedly what I noticed in my son Matthew. If you are considering homeschooling a visually impaired or blind child, especially those with additional impairments and autistic-like behavior, I highly recommend her six books.

Children who are highly challenged and severely handicapped do not respond to traditional educational theories. Dr. Nielsen introduced the “natural learning concept” into the special education field. The natural learning concept’s first step involves simply backing off. This takes pressure off the child and gains their respect and trust. Children in a secure environment will begin the natural process of exploring and experimenting. Dr. Nielsen creates what are called “learning environments”: tangible settings that the child would not normally be subjected to because of their handicaps. These are usually playhouses filled and decorated with items of different shapes, sizes, and textures. She then brings it to the child, who can enter and learn at their own initiative.

The natural learning method and her accompanying “learning environments” have literally opened up a new world to many deaf, blind, and autistic children who were labeled unmanageable and unteachable. I know Matthew blossomed under this approach!

However, I still felt uneasy. I didn’t know where to go when I found Matthew falling into the gaps between developmental spurts. How did I get Matthew to the next step? What was the next step, anyway?

I dug out my “birth to 12 months” book I received as a baby shower gift with my first child and purchased another child development book that went up to six years. I studied and prayed for insight. Slowly, I began seeing where Matthew measured up developmentally, but I still wasn’t quite sure where he got hung up.

God and a friend led me through wisdom’s door to the Hadley School for the Blind. The school provides a free correspondence course to parents of blind or visually impaired children. When you register, you are assigned a personal teacher/counselor. Our counselor is a great listener and has proven his reliability through great advice. You can choose between different courses on child development and teaching techniques for children with sensory impairments. We received wonderful notes of encouragement along with our certificates of completion, and sometimes even an additional book to keep us going!

I ran across a similar correspondence school called The John Tracy Clinic. It’s the same type of setup, except they provide a program more directed to your child’s current developmental stage. You receive pamphlets of suggested activities to help your child complete the next step, as well as the same great advice and friendly encouragement.

At this time, I began to realize that we were not alone. I always knew that God had not abandoned me, but I often felt isolated from other people. While seeking for a way to homeschool Matt, I ran across some very helpful support groups. I have made many new, lasting friendships with people who have shared in the suffering of this imperfect world.

NATional cHallenged Homeschoolers Associated Network (NATHHAN) is a wonderful network for encouragement, prayer, and support. I learned from parents who have already gone through the suffering I was experiencing. NATHHAN is developing an extensive lending library and offers a resource guide filled with helpful sources and materials for helping homeschool a challenged child with a Christian perspective. Membership is $15 a year and scholarships are available. NATHHAN also offers a $15 discount on the HSLDA fee if you join through their membership.

Blind Children’s Fund has sponsored some excellent seminars (they also offer the Lilli Nielsen books I mentioned earlier). They provide abundant information on visual impairment and blindness, not only to parents, but to educators and the community. They also publish the VIP newsletter.

The National Association for Parents of Visually Impaired is another support group I have enjoyed. NAPVI is an assembly of, by, and for parents. They are the watch dogs, and, through their newsletter Awareness, alert the community on visual impairment news and information.

I also found some sources for educational materials for the whole the family:

  • Chicks (Christian Homeschoolers Instructing Challenged Kids for His Service). This network provides help to parents homeschooling special children by providing resources such as books and magazines, listings of resources and programs which accommodate special children, conventions, etc.
  • Eyes of Faith Ministry. This non-profit organization provides Braille materials, from preschool through high school. This parent co-op carries: K–12 A Beka (paces and publications), Bob Jones University 1–12, and ASCI’s Willing to Wait 4th grade character course (materials provided in Braille or on tape). They ask a suggested donation to help cover costs, but will not refuse requests because of financial difficulties.
  • The Elks Therapy Program for Children, Inc. This program provides therapy for qualifying children free of charge. The therapy is provided at your home, at your convenience. We have found our therapist to be very supportive of our homeschooling program. Check for availability in your area.
  • Hope, Inc. (Home Oriented Program Essentials, Inc.) A great source for materials on child development, as well as self-education materials on blindness and deaf blindness. They have an excellent resource guide entitled Resource Manual for Understanding and Interacting with Infants, Toddlers, and Preschool Age Children with Deaf/Blindness.
  • Mier Van Der Roh’s Homeschool Picture Book and Construction Manual provides a less expensive way to provide your child with the equipment used in the Lilli Nielsen books.

This is by no means an exhaustive list, but one that has benefited this particular homeschooling family. Remember that there may be many other resources, national and local, yet to be discovered.

We have used all of these resources to achieve a delightful outcome. Matthew is now happy and enjoys exploring, discovering, and listening about his world.

The most important fact that I discovered while developing Matt’s homeschool program is this: You, the parent, will always be your child’s greatest advocate. No other professional knows, cares, or loves your child with the depth that you do. This, more than any other factor, is important in creating a successful learning environment for the challenged child.


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