Last friday, Rick and I took Queen Teen to the Low Vision Clinic at UC Berkeley for an assessment. It had been five years since her last evaluation and we wanted to see if there'd been any changes. Plus, Queen Teen is eager to read and has been picking out sight words like "the," "and," and "there." She can identify items from a list by looking for the first letter of that word (M for "milk") and keeps asking "What is that word?" If there's any chance she can learn to read, then I will do everything I can to help her.
Laura Fogg, her Orientation and Mobility instructor, met us at the clinic. I invited her because Queen Teen has been less than cooperative at appointments. Even something as simple as a quick doctor's visit for itchy skin can become a tearful battle. Between adolescence and the hundreds of doctor's appointments Queen Teen has had to go through since birth, I can understand her lack of enthusiasm about ANOTHER appointment. Laura seems able to draw Queen Teen from her shell, plus she works with her at school so would have more info than I about how Queen Teen uses her vision.
As expected, Queen Teen was NOT happy to be there. She went along with the visit for a while, but as soon as it got too hard, or went too fast, she shut down and refused to lift her head. Then when the doctor tried to put glasses on Queen Teen to test lenses, Queen Teen kept shoving them off her face, once knocking the lens completely out of the frame. The doctor went too fast for Queen Teen to keep up, quickly switching from one task to the other before Queen Teen fully understood what she was supposed to do. I understood why the doctor was in such a hurry, but I wish she had taken more time to show Queen Teen what each test was and how it worked. Queen Teen is a curious person and likes to examine and question objects before they're shoved in front of her face.
There were times when Queen Teen got into the games, laughing when she stuck her finger into the hole on the contrast cards and playfully snatching the light wand during the visual fields test. She played with Laura and answered questions clearly, saying "I can't see that." I was proud of how she spoke up for herself, telling us when she could or could not see something and asking questions about what was happening. This is not a passive Multiply-Disabled child; this is a girl who is capable of understanding what is happening to her and expects us to explain WHY we're doing it.
Happily I can report Queen Teen's vision hasn't changed much in the last five years. Unlike her hearing and ataxia, her vision is stable. The doctor changed her prescription just a little to accommodate nearsightedness and astigmatism, which are actually normal changes most children experience as they grow. She's seen an opthomologist every year to check her eye health and her doctor has said it didn't appear that Queen Teen's vision had changed (her doctor is a certified Low Vision expert, so I know this woman knows what she's doing). Now we have verification from two Low Vision experts that Queen Teen's eye condition is stable and we don't expect it to worsen any time. Thank goodness!
We also talked about ways to help Queen Teen read and discussed the use of a CCTV. I'll look into getting her one for home use. Because of how bad the budget is in California, I expect a battle finding someone to pay for a CCTV, but if that's what Queen Teen needs to successfully learn to read, then I'll find a way to get her one, even if I have to hold a bake sale!