“No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.” ~Heraclitus
As the chaos settled after my son was diagnosed as deafblind due to Usher Syndrome, I began an intensive search to find another child like him, another family like ours, and an exact template for his educational needs and supports. One of the first resources I discovered was a distance learning course on deafblindness in preschool-age children offered by the John Tracy Clinic. (This is no longer offered, but they do still have a course on preschool-age children with hearing loss.) Although Hunter was not in the preschool-age bracket at the time, I found much of the information extremely useful. Still, as I went through the materials, I found myself thinking, “This is NOT my kid,” and I wondered where in the world I would find information that would fit his situation exactly.
I found additional parent resources through the Hadley School for the Blind. One that I found particularly useful was an Orientation and Mobility course that I took when Hunter was first being introduced to the white cane. Again, the course was full of rich information, but as I learned how a child with blindness can be taught to hear the patterns of traffic and the sounds of his surroundings, I thought, “This is not my kid. He cannot hear. He has deafblindness.”
Later, I thought I had discovered a gold mine, when I was introduced to DB-LINK, a national clearinghouse with a wealth of information on all aspects of deafblindness in children. (Note: although DB-LINK is no longer in operation, its information and resources are now part of the National Center on Deaf-Blindness.) I was thrilled to have access to so many resources on the dual sensory disability that impacted every aspect of my child’s life. Yet, with all of the information I now had available to me, I still didn’t feel that any of it was an ideal match for Hunter’s needs. Truth be told, it was at that moment that I knew that there was no other kid like mine, because Hunter, like all children with deafblindness, was unique. This population of children is extremely varied. There are a wide variety of etiologies of deaf-blindness and different types and severities of vision impairment and hearing loss that combine in numerous ways. Many, but not all, children with deaf-blindness also have additional disabilities or medical problems. And, like all children, they have their own preferences, interests, ideas, and styles. No two are exactly alike. As I learned about the range of children who are deaf-blind, I realized that it was my job to accept this and learn to adapt what I found to create the right template for Hunter.
This has been a challenge that I face to this day and I don’t think I’m alone. I am sure that many parents and family members (and professionals!) often feel this same way. How do you take the bits and pieces of available information and resources and make them appropriate for a specific child? It is an art that takes much work, discipline, and creative out-of-the-box thinking. I often share the simple example of calendars. Have you ever met someone who does not use some sort of structure or organizational tool to help them keep track of their day-to-day life? You can purchase daily, weekly, monthly, yearly, or multiple-year calendars. And with our fast-growing technology, many of us use our smart phones, tablets, and computers to organize our schedules. Students with disabilities also need concrete systems of routines and individualized calendar systems to help them anticipate their schedules. Regardless of the tool, however, I think it is safe to say that we all have a method of using some type of calendar system. It is different and unique for each of us, yet serves the exact same purpose.
As parents, we are often in search of the perfect fix, the perfect resource, or the perfect plan for our kids, but instead of recognizing what the resources we discover have in common with our child’s characteristics and needs, we may tend to think, “This is NOT my kid,” and continue our endless search. What we must remember when it comes to finding helpful resources is that we can adapt them and make them our own for our children with disabilities. There are no perfect or exact recipes, but for most situations, foundational knowledge exists to get us started planning for our children’s individual circumstances.
By Patti McGowan