Everyday miracles: A day in the life of a special needs mom

Patience is passion tamed. (Lyman Abbott)

My third daughter was born on a Monday, after a long and exhausting labor. Her appearance was a little shocking: she had large olive-colored eyes and a rug of dark blond hair sticking straight out from her head."Monday's child is fair of face." Yes, she was a little beauty and drew admiring remarks from many strangers as an infant. You could tell just by looking at her that she had a mind of her own - from the very day of her birth. As soon as I saw her, I thought there was something special about this baby. For three years, I marveled at her tenacity, her passion, and her precociousness. Anything she put her mind to, she could do or learn. She mastered her alphabet and was writing letters long before her 3rd birthday. She was athletic and driven. Any attempt to control her, though, was a little like putting a leash on a lion.

Little did I know that all those character traits would be used to their maximum capacity in her little life. On her third birthday, she received her immunizations to bring her up to date before she had her tonsils removed the next week, in a desperate attempt to control her severe childhood asthma. She was never the same after those shots. Although it took 2 weeks for the doctors to catch up, by the next day I knew something was wrong and, after a week's time, I was desperate for an answer. It wasn't until she was almost comatose, unable to speak or move normally, that a team of doctors at the ER of the closest children's hospital diagnosed her with encephalitis, a horrible brain infection that was threatening her very life.

Amy was initially given a 50/50 chance of survival, and as the days went on without uncovering a cause for the infection, those chances decreased to 25%. She did lapse into a coma at one point, and was whisked away to surgery for more diagnostics that eventually confirmed that the infection was a rare vaccine-related complication. She spent four weeks in the hospital and many more weeks after that in and out as the months went on and other complications cropped up. Eventually, she was discharged unable to walk, but speaking again, and able to pedal a tricycle. The alphabet - indeed all those milestones she had precociously obtained - were hardly a memory in the aftermath of this ravaging disease. We were just glad she was alive.

For months she drank from a bottle. For a year she was unable to eat any food that wasn't ground to baby-food consistency. For nine months, seizures went undetected and we threw up our hands in exasperation when she would morph into an infant who couldn't be comforted dozens of times a day. She was still unable to feed herself by age 4. She didn't learn how to put her own clothes on again until age 5. At age 6, she was starting to remember some letters and haltingly sang along with the Alphabet Song, but she didn't recognize them on paper and still couldn't draw a symmetrical circle. She still sucks on a Nuk despite the teasing of her peers.

One thing she regained quickly was control of her body. Although she spent 2 very uncoordinated years relearning how to run, skip, jump, and walk a straight line, she was helped immensely by weekly physical therapy and her own determination. This, apparently, was something she could force her body to do by sheer will. Soon she was climbing too fast, jumping from too high, and racing down the road on a two-wheel bike going as fast as her little legs could pedal.

We learned that she was an amazing swimmer when she took swim lessons. She mastered strokes long before her older sisters and had no fear of the deep end (which is both a good AND a bad thing, as any mother knows!). This summer, she wanted to try soccer. We found an affordable camp through the city's Parks and Rec department. And lo and behold, she's a little soccer protégé‎ as well! On the first day, she was learning to head-butt the ball, dribbling through cones, and stealing the ball from some very frustrated other kids much older than her. There is no doubt the girl is an athlete - and a star athlete at that!

And while it has been sheer joy to find things she excels at, there has always been that underlying problem of school. I have certainly learned a lot about parenting a child with special needs. I've read countless books about how to help her control her intense emotions, how to teach her various tasks of daily living, and how to teach a child with learning disabilities their letters and numbers. We've written with our fingers with paint and in piles of flour and cornmeal. We've purchased countless learning aids. We've played with WikiStix and Playdough, wood letter parts and crafts sticks, sand and clay and plastic toys and sections of PVC pipe. We've used music, dance, we've laid on the floor making letters with our bodies. We've memorized several versions of the Alphabet Song, and, hilariously, she memorized the one in German long before English.

But what we couldn't conquer was the fact that the part of her brain that interprets visual information was no longer connected to the parts of her brain where her long term memory storage was. No matter what she learned in one day, by the next day - or even the next lesson - it was forgotten and had to be learned again. Letters were as foreign to her little mind as a secret code that couldn't be broken.

Every few months, I tried something new. I despaired many times. I imagined dark and dingy futures for this brilliant little child - maybe she could be a dog-walker, I thought. Or an artist. Maybe sports will be her ticket to a paycheck. I wondered if she'd ever be able to pass a driving test or fill out a job application.

I never let her in on the little secret that maybe her brain was so permanently damaged that she'd never have a "normal" life.

Instead, we focused on all the things she did well. We recently added soccer to the list, and she is looking forward to joining a fall league. Whatever team she joins, she'll no doubt be filled with strategies for winning. With all that determination, she is an excellent leader. As a third child, she's also learned to be a diplomatic and charismatic one that other kids love to follow.

We were facing another school year. I was trying to come up with new ideas for curriculum. We put the kids on a waiting list for a Montessori school. I had even begun to doubt myself - despite my PhD and all the doctoral classes I took on educational strategies and how brains learn and the "unofficial" degree I'd given myself in special education techniques in elementary school children. Maybe a special ed teacher could do better than I.

And then, a miracle happened. She learned the Alphabet Song this spring. It was a huge break-through. Next, she started to remember letters when she would see them - first the letters in her name, A-M-Y, then the letters of her brother and sisters names, and soon letters for her favorite activities, like "S" is for Soccer and it looks like a Snake. She amazed me as I watched her build little reminders for herself - almost like filing tabs in her brain that helped her call up the necessary information. She was actively "scaffolding" - linking new information to old information to strengthen the wiring that connected her conscious mind with unconscious memory. I could literally observe her building new pathways in her brain.

With all this new learning, we noticed a new development. When she focused 100% of that mental energy on learning letters, her body seemed to spiral out of control. She might look at letters while standing on her head, jumping on one foot, or climbing up and down off my lap. Her tongue stuck out at odd angles and sometimes her eyes even crossed! I called her neurologist and neuropsychologist down at Mayo, describing the new symptoms with a modicum of concern. The answer? When a child is building new pathways in the brain, so much of their physical and mental resources are consumed that behavior and physical control goes out the window. It is a common phenomonon among brain-injured children and makes them a classroom teacher's worst nightmare.

When the Montessori school called to say she and her brother had a spot - but none for the older two girls - I hedged. I simply couldn't picture this little girl in a classroom, even one she could move around in. No teacher on earth has enough time to allow one child to go berserk physically while trying to come up with the name of a letter. Not only that, but putting two kids in school and keeping two out sounded like a disaster in the making - even more stress for mom, not less, and probably two little kids would often fight to stay home instead of going to school.

I needed one last little reassurance, and I got it on August 6th. I needed to have confidence that I could teach this child successfully. That I wasn't the thing hindering her progress. And on August 6th, she crept into my arms and asked tentatively if I would teach her how to read. We got out the Speller I used with her two older sisters and began the first lesson. A-aaah-apple. B-buh-ball. C-kuh-cat.

She doggedly repeated my examples and followed along with her finger. On the second time through, her eyes began to burn with some new light. And by the end of that second time through, she GOT it! She understood, finally, that letters represent sounds and sounds put together make words and all these crazy symbols on the page were USEFUL for something! It wasn't just an abstract memory game anymore. She understood, for the first time, why it's important to learn to read. The muscles all over her body tightened. Her eyes widened. She began losing control over her arms and legs. And then it happened.

She looked down at the page, and made the sounds for each letter: C - kuh. A- aaaah. T- tuh. Kuh-Aaah-Tttuh. CAT. She looked up at me in wonder, and repeated the word. Then she ran screaming and hollering for a pen and paper. She wrote out the letters and said THAT MEANS CAT!! I CAN READ THE WORD "CAT"!!!!

After that light-bulb moment, she read the page over and over, sounding each word out. There it was - she COULD read. She COULD be taught this difficult skill! And in that moment, I watched her horizons open up in my imagination - and hers. If I can read, she said, I can do any job I want. I can even go to college where you teach, Mama.

Without a word on the subject, she had known all along that this difficulty she was having? It was a game-changer. And the game had finally changed in her favor. So, with the tenacity - bordering on ferocity - she used when she learned to walk again, learned to zip her pants, learned to climb steps on her feet not her knees - she is now learning to read. Every day we read together, and every day it gets easier. The new tracks have finally been laid, and now we are zipping along on them. What seemed impossible a week ago has become her new normal.

For everyone who has prayed for this little girl in the past four years, thank you. For everyone who has treated her like a normal kid, thank you. For everyone who believed she was capable of it, thank you. For everyone who suggested a new method or bought me another book or spent time with her teaching her these things, thank you.

I hope her brain keeps healing itself. I know she will continue to work around the roadblocks that are "built in". She is a master at finding another way. I can only imagine what a kid like this will turn out like as an adult. And I'm looking forward to that day with more joy and expectation than ever before.