Today is a day James and I look forward to all year long. It's the annual Utah Braille Challenge!!!!!
We love attending this event with Noah. It is his third year competing, and he's better prepared than ever before. Since the beginning of the school year, Noah has met with his visual impairment education specialist four days a week for an hour a time (in the past he only met with them twice a week). He has improved so much. He's with the older division this year, and most of the kids in his group are already profoundly visually impaired and use braille 24/7. I'm glad Noah's disease is progressive, and he will not loose his sight all at once. But it's hard to stress how important this training and education is when he can still see a lot of things (well, except at night. His night blindness has progressed significantly over the last year).
I always get teary during the first hour of the event. You see the same kids year after year, but you can also tell which ones are new to Braille or have recently been diagnosed with a VI. They have a lost, confused and scared look that I remember from our own experience all too well. But it doesn't take long to realize just how happy and content and well-adjusted these children are. They have their own community that is very tight knit and supportive. The parents are very open minded and will share their experiences and give advice openly. I love that every year I can talk to a wonderful mom whose daughter is from our area and 3 grade levels ahead of Noah. She can warn us about the trials ahead, give pointers on the best teachers, and talk about the shared frustration of only having 3 specialty pediatric opthamologists in the state (but the upside is that because there are only 3 we all see the same ones and can compare diagnosis, treatments and medications).
The best part of the experiences has to be the smile on Noah's face throughout the day, and the feeling of complete acceptance he gets from being with kids just like him. The other 364 days a year he is "that kid in 4th grade who is going blind" to the other elementary students. Here, he is just one of many. I'm not inferring that the children at school are unkind; on the contrary, they are wonderful and Noah has so many friends. For the most part they forget easily that he is VI. But he never forgets, and always feels like his disease is something that makes him different.
I need to give a special shout out to the amazing educators here. Much is said about the quality of American education. Many fingers are pointed, and blame is placed on why we are not pumping out as many engineers and doctors and nobel laureates as other countries. But education is much more than teaching a child facts and numbers. It's more than a standardized test can quantify. It's the love you see in these teachers' faces as they gently guide them from one room to another, how they sweetly grasp a child's hand and say "Vicky, it's Karla. I am so so glad to see you here!". It;s the kind hearted teasing and laugher they share back and forth with their coworkers and students. I personally consider Noah's teacher an angel. Karla has been one of the greatest blessings in Noah's life. She found him and us right after he was diagnosed and we were so woefully uneducated on how to help him. She has fought for him and is such an advocate for the visually impaired. She is working with a researcher at the University of Utah to revamp they way they teach brailee to VI students so that the children learn to read through braille, not reading in addition to braille. Noah is one of their research subjects, and I know they are going to revolutionize the field. Noah has improved 300% over the last year, and those numbers speak volumes.
A young man who just lost his vision to cancer and is wheelchair bound just sang a song with his teacher about killing cancer because it's a nasty peanut butter-egg-cheese sandwich. Hearbreaking. What a mission of love and errand of angels.