Read me a story

One of Erica's many diagnoses is cortical vision impairment. When she was an infant, I would hold all manner of black/white/red books and images up in front of her but she seemed not to see them and preferred to stare out the window at the light filtering through the trees. To this day she seems not to see her own image in a mirror. The day she watched a Baby Einstein video with interest felt like a miracle to me.

Being a good children's librarian, I longed for the day when she would say "read me a book, Mommy" and I waited and waited. Of course I read them to her without being asked. At first she just fell asleep, lulled by the warmth of my lap and sound of my voice. Then when she developed the dexterity to turn the pages (around age 3) she didn't want to let me finish each page before lunging to turn it. Then she got too big to hold on my lap (I couldn't see the book over the top of her head) but she had a hard time sitting up enough to see the pages when we sat side by side. So I took to lying next to her on her bed and holding the book up above our heads to read it. Boy does that tire out the arms!

We went through a long dry spell (over a year) when she never wanted me to read a story. And now, somehow, we have finally arrived in a place I cherish. I am fully cognizant of the fact that requesting a bedtime story every night is part stalling tactic and partly a way to keep me in the room with her so that I can't be paying attention to little sis Natalie. But the nightly routine now ends with me sitting in the chair in her room reading a story from a book that was my Dad's in childhood and was read to me also as a child. As I close the book and glance at her sleeping, I always think "finally! the words I waited so long to hear"

Mommy? Read... a... story?

You bet, kid! Thanks for asking!!

Wanna ride bikes?

Well, it has arrived. Erica's new bike. A Freedom Concepts "Discovery" DCP12! It is cute. It is pink. And she can ride it! She requires adult assistance in steering with the attached rear handlebar/brake, but she can now chase and race her sister-on-a-cute-little-tricycle down the sidewalk. Crazy how that little red tricycle cost $30 at Wal-Mart and this one ran about $3000!! We talked about doing a fundraiser. I made some half-hearted inquiries to local organizations like the Moose Lodge and the Elks Club. I researched some grant organizations and even downloaded the dozens of pages of applications and regulations to wade through in order to be put on a waiting list for receiving a free bike. And then we decided to use our "stimulus check" plus her Christmas money plus a generous gift from grandpa plus a hit to her college fund and just order the darned thing. We were actually able to use a budget for adapative equipment from her Medicaid waiver to cover the "accessories" like neoprene straps on the pedals and chest harness on the high-backed seat. With Erica, you never know if something you move the Earth to get for her will make her excited or foster total indifference. The other day we were returning home after school and she was complaining that she didn't want to go home. I suggested a bike ride, and suddenly she was all excited. Ah, that warm fuzzy feeling in my heart! And once we were cruising down the sidewalk, she said "Mom?" I said "what?" She said "it's a beautiful day."

Yes, my peanut, it is indeed a beautiful day.

Well, the start of school has not been without its wrinkles. The aide we wanted couldn't afford to work for the district, since they don't provide benefits. The first aide they provided called off 3 of the first 7 days of school. The temp they brought in while they searched for a replacement was WONDERFUL and we loved her but of course she couldn't stay. The new aide is very nice, though young and inexperienced. I am praying that she will be a good fit.

Aside from that, things are going really, really well. The principal (I love her!) had additional handicapped spaces painted in the parking lot, the PT and OT ordered a new chair, adaptive computer keyboard and special scissors for Erica to use in the classroom. Three of her new classmates were old friends from daycare. The scrapbook I made to help other kids get to know her was a big hit. There have been many opportunities to use her assistive communication device in class, including being tested on her phone number and address, reciting the class mission statement, singing a song about Johnny Appleseed and reading the book "Brown Bear, Brown Bear."

The PTO fundraiser was a walk-a-thon, and each class walked together around the high school track next door. Erica carried the class banner as her aide pushed her around the track in her chair. Without actually signing up for it, I somehow ended up being one of the room mothers so I am now helping to plan the Halloween party. I am also working with kids in the class out in the hall on reading practice (letter and sight word recognition for now) as a "Parent Pal."

Erica is learning sight words, she can cut paper using the adapted scissors, she is starting to make recognizable lines and circles on paper and she is making friends!

We are off and running in the wonderful world of elementary school!