Suppression

I feel like the past couple of months have been this insane whirlwind of activity, but in a good way. At Lilah's last IEP meeting, I was finally feeling pretty amazing about everyone involved in her care. Her OT Meghan said she still felt like there was a missing piece and wanted to call in a vision specialist from the county to evaluate her. I signed the piece of paper requesting the evaluation. It was also decided at that meeting that any and all formal testing for Lilah would be shelved for the time being. Her limitations made it impossible to administer a test and get accurate results.

The weeks past and Lilah was scheduled for a rough time of it when it all finally came together. On a Monday, the Oakland County specialist would be at the school to evaluate her first thing in the morning when she was at her best. Tuesday she'd be evaluated by the Beaumont Hospital vision therapists. Wednesday she would follow up with her neurologist.

Monday I paced around the school office waiting for Lilah to emerge from testing so the team and I could sit down with the evaluator and hear her findings. I finally saw Meghan escorting a smiling Lilah back to class. A few minutes later we were all sitting around a table while a tall woman with blonde hair started pulling out weird charts and tools and going over her notes. The conversation is still kind of a blur of incredulity for me, but the basic takeaway was that 1) Lilah for the most part has no depth perception, and what she does have comes and goes. If she were wearing 3D glasses to watch a movie, she'd still see it in 2D. 2) She has 20/20 vision, a wide visual field, and sees color very well, but her processing speed is about 3x longer than most kids her age. If she were to take a timed test, she would do very poorly, even though her knowledge was at 100% accuracy. She performed best with 20pt font in Comic Sans. 3) and probably the most alarming to me, was alternating suppression of her vision. It was explained like a highway that should have three lanes for motor, auditory, and visual feedback. Instead, hers had two lanes and her brain shuts out her eyes when it feels overwhelmed. One at a time normally, sometimes both. She had me put on glasses to show what Lilah saw. Halfway through reading a word, my eye dominance would switch and and the text would look redacted.
"This is what trying to read looks like for her?"
"Yes. She can be trying to focus on a word and when her left eye gets to midline, she might blink and the rest of the text might go black. Or she can be reading along from midline on with her right eye, and when she goes down a line, her left eye might go black."
I felt like the world's biggest asshole for every time I'd get frustrated with her for knowing a sight word one day, then not knowing it the next. Or knowing phonics really well but not being able to sound out basic words yet. Or not being able to find a sock in a sock drawer. Or falling or tripping in her own house in her own room.

The takeaway was that we needed to introduce concepts in a quiet room with 20pt, Comic Sans font in yellow or red text on a black background. She said we needed to put yellow tape on stairs and corners and common walkways where she got hurt most often, and orange cones in gym to alert her where perimeters were. I felt like I stumbled out of that meeting under the weight of new information.

On Tuesday, the Beaumont visual therapists took the information I gave them about the day before and built their testing on where Oakland County had left off. They agreed, but added tracking problems and issues converging to the mix. Amy, the visual therapy COTA, wanted to spend their time really integrating her ATNR reflex and improving her bilateral coordination WHILE strengthening her visual skills. The things they had her doing she felt were fun. Lying on the ground with a white ball swinging overhead while she tracked it, or singing a song while doing half-snow angels, one side at a time. Amy did note that Lilah would tap next to the text that was suppressed, to "turn it back on". That was promising that she could be rehabbed. Apparently some kids lost the feedback for the entire day once it went out.

Wednesday we checked in with Dr. McCormick. I gave her the run down of the previous few days. She said Lilah's overall tone and strength had improved, but honed in quickly on the new problem areas. She moves with this grace and precision and her eyes scan and take things in. She reminds me of a bird, the way she tilts her head and leans in, getting a better look or feel for what she's trying to understand. She said Lilah's tracking WAS choppy and she didn't converge or diverge well. She wanted us to check in with Dr. Rao, Lilah's ophthalmologist, and get an MRI with contrast to make sure her vision problems weren't a congenital cyst on the brain or anything else. "Or anything else.". I asked if it could be without sedation. She explained the test to Lilah, who requested to be asleep during the test. So I was convinced, if that's what she wanted. Just sad and apprehensive.

Dr. Rao said there was nothing wrong with her eyes and her tracking issues were something she'd grow out of. Weekly vision therapy improved her skills and her reading was coming along more all the time. We put the yellow tape throughout the house and the falls and walking into corners all but stopped. The schedule for the MRI only allowed it to take place on her birthday. I was devastated. She was optimistic and sunny.

At work the day before the test, I faked through the day with a smile. Dr. Kolin, whose youngest daughter had so many similar issues and went through vision therapy, asked about the MRI. She was warm but matter of fact. "It's so nice this will be off the table, since they aren't going to find anything. My daughter had one too, and now even in college, every time she gets a headache it's one less thing I have to worry about."

Even though she would have to spend her birthday fasting, the plan was to take her to her favorite tea room when she was awake and felt like eating and she'd have lunch and dessert and tea and get her presents. A Rey costume and lightsaber, after going through her "Jedi training" earlier that day. I knew how excited she'd be about getting to dress like her favorite character from the movie. As I was leaving for the day, one of the other doctors sent his best wishes for the day to go by quickly and her birthday after to be great. He ended the message with MTFBWYA - May the Force Be With You, Always. I closed my eyes tight but one tear got out. She was so loved, and well taken care of. We lived in an area where Lilah could get the help she needed from people who could actually give it. People with incredible expertise and intuition, compassion and patience. Lilah herself overcomes mental and physical obstacles every day and fights against her own body and still smiles when she sees the white crocuses open outside her window and lives to hear the birds sing in the morning. She'll give up her lunch because I sent her with fish and the little girl she sat next to said she was allergic, so she doesn't want to hurt a friend. This little girl amazes me every day and I feel like I can never do right by her and give her the existence she deserves. But the Force really is with this one, and I know she'll come out stronger on the other side.