When Medical Conditions Influence Educational Decisions
"Why don't you homeschool Nathaniel?" The question was the first thing my mom asked when I answered the phone early Tuesday morning. It was asked last Saturday by a college friend, who has close to thirty years experience in public school special education, after she read my blog post about a Christian school's denial to consider enrolling my son. It is a question Rich and I have repeatedly asked ourselves, and it is a logical one given that homeschooling has been our educational choice for our other children. Answering the question and making any educational decision on Nathaniel's behalf forces us to reflect on his journey.
When placed in our home through foster care, Nathaniel was enrolled in early intervention services offered through our state Department of Education. We have homeschooled for twenty-five years. Our experience with public education was limited to our older two sons who attended while living at their mother's home. Despite the unfamiliarity, we continued the services. The intervention model identified the child’s greatest need and offered one therapist to address concerns. Nathaniel was assigned an occupational therapist. We loved her. However, together we quickly realized that Nathaniel had more needs than she could meet in an hour a week. Speech and physical therapy were added. Nathaniel’s experience with early intervention speech therapy has been documented here. Not soon after we began sessions, we stopped them. We sought private speech therapy to tackle what we knew would be long-term communication needs.
We settled into using private therapy for some of Nathaniel’s needs and state funded early intervention services for others. Working daily on therapy goals mimicked the hours I spent homeschooling my older children when they were young. Nathaniel’s early intervention team met regularly to set goals, and repeatedly insisted on an oral feeding goal despite my concerns of aspiration. No one believed aspiration was possible due to the complexity and severe narrowing of his airway. Nathaniel’s behavior when feeding, his constant coughing, his high level of tracheal secretions, and his frequent bouts of pneumonia convinced me otherwise. I fought hard against anyone who encouraged feeding him orally. It took close to year to convince therapists and doctors to do a swallow study.
The relationship with the occupational therapist we loved was taxed by the differing opinions and goals for feeding. When the swallow study showed Nathaniel aspirated all food and liquids, the therapist quit, and I postponed meeting new therapists from early intervention. All my effort shifted to three concerns: (1) Keep Nathaniel alive until (2) a medical solution could be found to improve his life prognoses while (3) giving him tools for communication.
Our journey of seeking medical services at Cincinnati Children’s Hospital Aerodigestive Clinic and diving into the world of Augmented Communication is also well documented on this blog. Everything else was secondary, including transitioning from early intervention to early childhood special education. The first year Nathaniel was eligible for enrollment in early childhood services found us taking six trips to Cincinnati instead. Nathaniel’s therapies were shifted to our local Children’s Hospital and his file with the state Department of Education was closed. Not because we were making a decision to homeschool, but because Nathaniel’s medical conditions and treatments demanded our full attention and time.
However, despite telling myself, “We are putting education decisions on hold until we have answers on medical concerns,” I did not do that. My twenty-five year career of providing an educational environment for the children in my home was impossible to set aside. In reality, planning preschool type activities for Nathaniel was the one thing I could control when so much of his life, and mine, was out of my control. I could not make doctors write letters or insurance companies approve tests. I could not improve nursing agency regulations or even find nurses who would stay awake for their night shifts. I could paint, color, read, and pray with my son. While a wake one night monitoring his medical conditions, I searched the web for information on homeschooling children with special needs. I stumbled upon a book that promised to be helpful and ordered it before morning.
Simply Classical; A Beautiful Education for Any Child by Cheryl Swope provided not only a wealth of information and how-to insight, it was written by an old friend. We lost contact shortly after she adopted a set of twins with complex medical and learning challenges. I did not know that she had homeschooled the children, or that she had written a book. Her narrative picked up where our friendship had fallen away. Reading took me back to the day I stood in her kitchen watching her multi-task the needs of two toddlers, and it moved me forward with a renewed vision of parenting and helping Nathaniel. Cheryl’s work with her own children, the example and encouragement it provided, and our renewed friendship exemplifies how God uses suffering and brokenness for good in our lives and through our lives to help others.
Two years ago this spring, we purchased a curriculum package, also written by Cheryl, for students at a chronological age or skill level of two to three years. Nathaniel and I embarked on what I told our private duty nurse was our “Mommy and Me Time.” Not homeschooling. Just spending time together. It packed easily into our Cincinnati bags and offered distraction during long stays in Ohio and local hospitalizations. The curriculum’s heavy emphasis on using oral language to learn beginning readiness fit well with my teaching style and Nathaniel eagerness to sit close and listen. It gave us many opportunities to deepen our work using Nathaniel’s talker. Like sharing books and educational moments with my other children, our learning time was a highlight of my day. "Mommy read," was Nathaniel first two word request; I suspect it spoke of his own approval of our time together. Uncertain of how many additional medical trips and hospitalizations would be needed this year, we moved on to the curriculum’s next level last summer. Nathaniel knows letters, numbers, colors, and shapes. His problem solving, listening, fine and gross motor skills are consistently improving. We continue to enjoy our Mommy and Me Time.
“Why don’t you homeschool Nathaniel?”
The short answer is that I am homeschooling Nathaniel.
The more applicable question, "Why wouldn't you continue to homeschool Nathaniel?" will require another post.