I love telling stories, always have. Growing up, I was the one people would look to and say, "You tell it!" I especially love the everyday stories that are downright hilarious when you include the right details, if you can tell it like it really was. Everyday life is just hysterical; and that's normally the kind of thing I write about here, a stormy day, an evening at church. But while everybody has silly, everyday stories worth sharing, I also know that everybody has larger stories they are living. Stories with an arc, that stretch over weeks, months, and years. We probably all have similar stories about stormy days, but we also have stories that are much more unique - that not everyone experiences. And those stories, more than the other kind, are the ones that shape us into who we are.
I haven't written much about our big stories here, mostly because I like to be through things before I talk about them. I don't like the imperfections and the unknowns that are so glaring when you talk/write during the process. I like things to be done, so I can end on a nice, clean, life-lesson note, tied up with a pretty bow. I'm mostly silent when I'm thinking and feeling my way through something, which has taught Dan to be a very patient man. And you may have noticed the silence here at times, like last week.
So at the urging of some dear friends, I am going to share a little bit of our BIG story with you. The one we're still in the middle of. Forgive the imperfections and unknowns and emotions running rampant, we're still figuring it out.
Our precious daughter was born with a condition called Optic Nerve Hypoplasia (ONH), which I'm sure very few people have ever heard of. In fact we ended up educating our pediatrician about the condition, instead of the other way around. When Madeline was four months old, we discovered that she was blind. They don't know what causes ONH, and unfortunately, neither is there a known treatment.
(Not necessary, but if you're interested in a bit of back story, here you go. Back story #1, back story #2, back story #3)
Well, Madeline is turning three this December, which means she no longer qualifies for Early Intervention (EI) services, and will have to move into the school system to receive further vision instruction. (The list of things that vision affects is a hundred miles long, and three years ago I never could have dreamed it. I am continually amazed at the things I take for granted as a sighted person, the things Madeline had to learn from professionals that I learned all by my sighted-baby-self.)
The most pressing issue now is braille. Sometimes, when I say this people look at me like I'm crazy, but it's okay. I'm used to it. They say, "But kids don't start reading until they are in the first and second grade! They spend all of kindergarten just working on letters. Madeline is only two, Kate, you may need to lighten up."
So I explain, "Yes, but sighted children have been exposed to letters and words since they were born. In the books you read, things that are labeled around the room, words on the television. They may not be able to read by themselves yet, but they see words, which is an important part of the learning-to-read process. Most children know their alphabet by the time they get into preschool. They can sing the song, recognize the letters. So if my child enters kindergarten with no braille knowledge? She is already, literally years behind."
I've found that a lot of people are interested to learn these sorts of things, and it's a joy to share it with them because I, for one, find it fascinating. But there are some who sigh, nod politely, and change the subject, because really, they didn't want to go into the whole thing. And they still think I'm a little fanatical for insisting that my 2-year-old needs to learn to read braille. (This is where I bite my tongue to keep from saying, "Would you prefer we wait for all the sighted children to pass her by before we begin to make accommodations for her? Well then, PRETTY PLEASE don't peg me as crazy-mom, because believe it or not, spending the last three years immersed in the world of vision-loss has taught me a few things. Things that you probably haven't considered." I digress.)
We live in a rural county, which means there aren't a lot of preschools, or kids with vision loss, and there certainly aren't a lot of vision teachers. In fact, I was recently informed that there are 3 other children with vision loss spread throughout the county. And there is ONE vision teacher. One. And there are ZERO children with Madeline's condition or level of ability (All of the other children with vision loss have other special needs. Madeline is developmentally on track, very bright, and just happens to not be able to see).
In our first meetings with teachers, specialists, and members from the school board, everybody kept saying, "This is such a unique situation. We'll have to make some calls and see what we can do for her." A month later we are still faced with the same three options.
1. Madeline enrolls in a special needs preschool.
2. Madeline enrolls in a private preschool in the county and receives vision services once (maybe twice) a week for about an hour.
3. Madeline stays home, and receives the same once/twice a week services.
We've decided against the special needs preschool because it would hinder her. She needs to be around her peers, and she has much more in common with typically developing kids who are sighted, than vision-loss kids with a host of other disabilities. And vision services once a week are not NEARLY enough to learn braille. You simply cannot learn to read in two hours a week! Not to mention that it is incredibly unfair for every other child to receive 5 hours a day of appropriate education, and for Madeline to receive 2 hours a WEEK of appropriate education. That gap is far too wide.
For two weeks I laid awake at night, walked through life like a zombie, resenting all the parents of children who could see, and cried enough that I should probably have worried about dehydration. I made calls to other school districts, all of whom "could not serve someone from out of county."
And so, on Tuesday, we drove to Talladega, Alabama to tour the Alabama Institute for the Deaf and Blind.
Talladega is more than 2 hours from our home, so we left the house at 6:40am. Dan, Madeline and I arrived in Talladega ahead of schedule, but barely made it to our 9:30 appointment because the campus was so confusing! None of the buildings are well marked, and the signs point you in a hundred different directions. We had to stop and ask for directions twice on campus. Dan and I sort of giggled because, let's be honest, it invited a lot of deaf-blind architect/sign-maker jokes.
Our tour began in the infirmary; AIDB is a boarding school. They showed us where the students go when they are sick, we met the wonderful nursing staff and saw all the rooms. They pointed out the private rooms, the security system, the comfy beds with super-hero and princess sheets. Dan and I barely spoke two words, and couldn't bear to look at each other. Madeline LOVED IT, as every room was stacked with toys. Next we toured the dental clinic.
When we got to the low-vision clinic, we knew we were in a special place. "What is Madeline's condition?" they asked.
"Oh! We have lots of kids here with ONH!" Dan and I looked at each other, huge smiles, tears brimming, as Ms. Pam took Madeline by the hand, and showed her all sorts of magnifying devices, light devices, and of course, M&Ms.
Then we drove over to the School for the Blind. We stepped into the preschool classroom, where there were 6 little ones sitting on a big colorful carpet for story-time. Nothing in the classroom would indicate that it was for blind children, except for the presence of braille on all the labels, which is hardly noticeable anyway. All the kids were wearing pilgrim hats, and there was a giant teepee set up in the corner. When we walked in, one little girl reached out and grabbed my leg. She looked up at me and said, "Hi! Who are you!"
I knelt down beside her and she grabbed my arm. I said, "I'm Mrs. Kate; I'm Madeline's mommy."
"Where is your daughter?" she asked.
I pulled Madeline over, and let them hold hands. "Hi, Madeline! I'm Charne!" (Charne is a DIVA; she was loud and friendly and dressed all matchy-matchy from head to toe in black and silver. Such a doll.)
In that classroom, there was this moment that I'll never forget for as long as I live. I was talking to the director and the teacher about Madeline's acuity when I looked down and saw my husband. He was crouched down with THREE blind children climbing all over him: one on each knee and a little boy named Ricky, standing right in front of him with two fistfuls of Dan's cheeks. "You found my cheeks! Can you find my......nose?" All three giggled and in an instant he had six hands on his nose. "Can you find myyyyy....chin?"
I watched him sitting there, playing with these children, the first we've ever seen that are just like Madeline. It was amazing, and I will never forget it. I love him so much.
Our next stop was the kindergarten classroom. We walked in to find one little boy was practicing his handwriting - a long string of C's across the page. The rest of the students were sitting around a table with their braillewriters. "Blue" the teacher called out, and all the students spelled the word "blue" in braille. When the teacher saw us, she stopped for a minute and showed us some of the children's work from earlier in the day. Everything was in print and braille; everything was dual. Their homework, their books, every label in the classroom. "Braille is never secondary here," she said. I almost cried AGAIN.
We saw the music classroom, FILLED with pianos and percussion instruments. Music! More-almost tears. In fact, unless otherwise noted, you can assume that I almost-cried all day long. We saw the assistive technology classroom with crazy things like braille laptops. How does that even work??? We saw the pool, and the gym where some students were playing "goal ball." We saw everything.
Remember that there is ONE vision teacher in our county? EVERY SINGLE TEACHER at AIDB is a certified vision teacher, library of congress certified in Braille, and then of course certified in their subject matter, etc. Every. Single. One. There are O&M specialists (orientation and mobility, for cane-use, etc.) and occupational therapists on campus, too. And the school is government funded, so it's free. FREE.
The situation at Talladega is ideal, except for one thing. It's in Talladega.
At the preschool level, Madeline would be allowed to attend just a few days a week, but kindergarten is all or nothing.
Again the choices:
1. Boarding school. AT THE AGE OF 5. If you are a parent, your heart just stopped beating and broke into a million pieces.
2. We drive to Talladega every day. This entails leaving our house at 5:45 (earlier if Madeline is to receive breakfast at school), keeping her in the car FIVE hours a day, and returning home at 5:15pm, best case scenario. We would both be gone 12 hours a day.
3. She could ride the bus that travels as far as Birmingham. We would wake up and return home at the same time, but only drive halfway, and she would ride the bus the rest of the way. Less driving for us, but also less time with Madeline.
4. We find an apartment or hotel situation for a night or two during the week. More time with Madeline, less time with Dan.
5. Madeline goes to school here, and receives vision services from our county.
There are, of course, other options, but they are either complicated, hypothetical, or dependent on so many other factors that it's nearly impossible to imagine them, and they're hardly worth mentioning here.
Truthfully, I'm feeling light-headed and swirly. Like there are SO many things to look into, not to mention a thousand other factors like Dan's seminary classes, our youth group, wanting to grow our family one day, money, etc. etc. etc. I feel like there is not enough time, or enough spread sheets or spiral notebooks to keep it all straight. I feel like my brain might short circut at any moment and I will smash a few dishes, run 12 miles, then collapse wherever I land and sleep for a week. Then I will wake up and it will all be a bad dream, and we can stay here in our lovely home with our willow tree in the back yard and minister to the teenagers that we love.
So there you go, a piece of our big story. The story of our trip to Talladega, and why I've been largely silent on everything besides pedestrian details of my life.Footnote: (Because I JUST CAN'T HELP tying everything up with a bow) I could fill VOLUMES about the miraculous ways that God has provided for us so far - literally - our life for the last 4 years has been pretty unreal! (I'm trying to decide who I want to play me in the movie.) Seriously though, we are SO IMMEASURABLY THANKFUL that He entrusted this precious one to us. Amazed and blessed and honored and thankful.