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As Mary's teacher, I've found from the beginning that she has very specific needs to enhance her learning. From her first evaluation, I could tell that positioning is a key for Mary to learn. She needs time in a well supported chair and then time on the floor to move and explore at her own pace. She needs to be given time to explore qualities and properties of materials before I require her to do the given task. She does best with demonstration and modeling tasks. She responds the best when we work one on one in a quiet environment when she is introduced to something new. I've found that she needs to know when something is going to make a noise, otherwise she startles. She needs visual and verbal cues to look at everything presented and to scan. In the beginning Mary required a wait time of up to two minutes to respond to tasks due to her muscle tone. She's very tuned into people, their faces and pleasing them.
After some time, I find that positioning remains the key to facilitating Mary's use of her hands, eyes, and voice successfully. She works best on a work tray surface that keeps her work contained. It's helpful when I allow a spacing of three to four inches between pictures and objects when she is making choices. She needs to be positioned so that the main focus of her attention is on her left side or in front of her. Too much visual clutter or activity on the left is distracting to her. A decrease in visual clutter is required when Mary is looking at choices within her work space. Mary needs opportunities to play and experience movement in a variety of positions. She can be quite a clown; she likes to joke around. Being silly with her will sometimes redirect her when she is getting upset or when something hurts.
*Names are fictional to protect privacy. This story is adapted from a document provided by Anchor Center.
"We had a boy with CVI in our clinic who could ride a bicycle in traffic, but he could not discriminate between pictures or shapes, or place pegs in a pegboard without using touch. He was aware of objects and seemed to know what they were if he was in motion or if they were. However, he was unable to learn to read print so he became a braille reader."
Maryke Groenveld
British Columbia's Children's Hospital, retired
Brittany came to us very quickly. She arrived just thirty weeks old and the words the delivering doctor spoke made my heart slowly begin to rise out of the pit of my stomach. She said that our little girl looked great for a preemie. She was breathing on her own, nice and pink, and her vital signs were strong. She was doing well. Brittany would need to stay in the hospital only until she gained some weight. My little girl would be fine. I rejoiced.
The news came that Brittany was not doing well, and the team at St. Anthony's had some concerns. She would need round the clock care, and her health began to erode. Oxygen, feeding tubes, life monitors, infections, and possible life threatening scenarios quickly became my reality. I prayed.
The eight weeks Brittany spent at St. Anthony's and Children's Hospitals I spent splitting my time between my full time job and remodeling the fixer-upper we had just bought. From 6:00 am until 10:00 pm I was working. My wife spent her time at the hospital with our daughter. My son spent his time shuffling between grandparents, mom, and me. I felt disconnected.
For six months I listened to doctors try to explain what they thought was wrong with Brittany and for six months nobody knew for sure how to label her: eating problems, mobility problems, visual problems, sensory problems, and motor problems. I accepted the here and now about Brittany, but refused to accept any long-term outlooks. She was my daughter and nobody was going to convince me that, "She would not...," or, "She may never...", or "She won't be able to..." When the doctors finally took pictures of her brain, my worst fears were realized. She had a condition known as Perivetricular Leukomalacia,* or a softening of the white matter of the brain. The brain was damaged globally, and it was irreversible. I cried.
Day to day life with my daughter is, well, normal. She has good days and bad. She has a wonderful personality, a great disposition, and is a happy well-adjusted child. She is learning to communicate. She is learning to see with her eyes, ears, and hands. Learning to sit up, roll over, and be mobile. Brittany has taught me so many things about herself and myself that sometimes I wonder who has the disability, her or me. I am so proud of her. I don't have a problem with the denial issue. I am living in denial in certain areas of her life. She will walk one day. She will speak words and communicate with people. She will not be legally blind all of her life. She will lead a normal life and be able to take care of herself. She will work at a job one day. Brittany will even make me a grandfather one day, if she chooses to. Many miracles will take place in her life, and I feel fortunate to be a part of that, Brittany is "Heavens Child."
My wife is awesome. She ferreted out information that for all practical purposes was not available to the public. She found services, information, and help for Brittany as well as the rest of the family that some how does not get publicized. I still can't figure that out. Billions of government dollars set aside for people like Brittany and nobody to spread the word. If not for my wife and all the people who surround her, Brittany would not have become the wonderful person that she is.
I have trouble sometimes dealing with the "she can't," "she won't," and "how sad it must be for you" people. I don't feel like a victim, nor do I feel Brittany is a victim. She is who she is for a greater purpose in life. I could not love her any deeper if she were born at full term with no complications.
My daughter has more than a label, a condition, or a disability. Brittany has hope, and love, and compassion, and lots of determination. She also has my heart and admiration.
Names are fictional to protect privacy. Story courtesy of Anchor Center.