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!

Kindergarten!

Many parents have told me that the transition from preschool to grade school is the roughest. Most of them haven't done the school-to-adult transition yet, so I'll be interested to hear what they have to say after their kids reach adulthood. But I will be so glad to have the first day of kindergarten behind us! What people say is generally true - special needs preschool is a happy place, where parents' hands are held and warm fuzzies abound. Erica attended the MRDD school for 5 years, from the age of 18 mos. to 6 yrs. Some years were better than others, but the facility is amazing due to the funding support for MRDD locally and the state and federal monies available.

Now we are jumping into the school district fray. Our district has a special ed. director who is a decent advocate and - I believe - has the best interests of the students at heart. Like any district, there is a limit to resources but ours provides more services than many. They have agreed to try full inclusion, enrolling Erica in a typical kindergarten classroom with a one-to-one aide. She scored at the low end of the "normal" range for typically developing kids, so if her physical challenges can be accommodated, it will be exciting to see what she can do. Our neighborhood school has never had a student in a wheelchair before, so we are pioneers of sorts (I hate being in that position!) but the students at this school will benefit so much from including Erica, and they deserve that opportunity as much as she deserves the opportunity to try to fit into their routines and social circles.

The traditional route for students in our district with multiple disabilities has been a program at another school that gradually includes them as they prove they can handle it. I really wanted to go the full inclusion route from day one. I hope that she doesn't miss out on progress that could be made with more direct instruction from a specialist in the other program, but I don't lose any sleep second guessing myself. I just pray for a great year.

Summer - don't blink!

Well, everyone knows the summer always flies by at the speed of sunshine. The fourth of July has come and gone, and already I've gotten my first "back to school sale" flyer in the mail. My thoughts of leisurely summer days were only partly realistic. We do get to sleep in some, except during Safety Town week... oh, and vacation Bible school week... oh, and days that we have early morning appointments. Oh, well. The wading pool hasn't even been put together on the deck - perhaps because of the giant inflatable water slide the neighbors have and invite us to enjoy? Hmmm. The list of things we'd like to do always exceeds the free time available, but we are having fun. That's the whole point of summer, right?! Just don't blink, or it'll be gone!

A new chapter for an old (OK, middle-aged) librarian

Well, the date is fast approaching. My last day of work. I have the greatest job in the world, with the greatest boss in the world, at one of the best libraries in the country, and I'm leaving it. Some days, I think I should have my head examined. But I've weighed the factors in this decision many times and every time I do, they come out more in favor of staying home for a while with my girls, now ages 6 and 2. Working part-time has been the best of both worlds for several years now. But even with a cushy schedule like mine (I work Tue/Wed/Thu each week), trying to work in PT, OT, speech, adaptive dance class and all other misc. appts. with various specialists on Mondays and Fridays is making me crazy. The thought of being able to spread them out over the WHOLE WEEK seems positively luxurious! Now, I'm not so naive as to think that my 20 "found" hours per week will result in actual free time. I did actually sit down and contemplate how I would like for those hours to be spent, but with kids all bets are off. I know one thing for sure... I'm going to spend more time playing with them! And if that means that my house isn't any cleaner or more organized (one of my New Year's resolutions) or that I don't manage to create home-cooked meals from scratch (my husband is a better cook, anyway) then... at least I will look back on these years and say "wasn't that fun when we used to sit in the driveway all afternoon and made chalk drawings?"

Erica starts kindergarten in the Fall and I'm asking the district to place her in a regular classroom with para support, as opposed to busing her across town to the MH class at another school. After doing a lot of research (imagine that, a librarian reading!) into inclusion practices, I support the theory that a student's Least Restrictive Environment is the class in which they would enroll if they did not have a disability. I know this wouldn't work for all kids with special needs, but I truly believe it will for Erica. One thing I'm planning to do with my 20 hours is to make myself available to help out at the school, whether for PR/goodwill or actually doing things that will free up staff time to address my daughter's needs.

I am sooooo lucky to have this choice! And I'm really looking forward to the first real summer vacation that I've had since high school. But I'm also a very nostalgic person who has a hard time letting go of things that have meant a lot, so the next couple weeks of "last times" will no doubt find me choked up a lot. After 17 years as a librarian, my identity is pretty tied in to my career choice. I'm maintaining my professional membership and have joined the library committee at church, so I'm not "letting go" of that part of my identity, just re-shaping it a little (OK, a lot). But the decision feels right, so with more eagerness than anxiety I say.... here goes!

Be my Valentine...

This photo is a new favorite. After finding coordinating outfits for the girls at Old Navy and scheduling an appointment at our favorite studio, the darlings presented the usual challenges to getting a good shot of them together. Erica can't sit up for very long and tends to droop gradually but steadily. When she does look at the camera, her eyes have a decent chance of crossing before the shutter is snapped. Natalie has very little patience for being photographed; the best shot of her is usually the first one, since for each successive attempt she will sit for less time and be less willing to smile. But she does love her sister, and she does love giving kisses! Hugs and kisses from my girls and "I love you Mommy" are cherished moments indeed. Happy Valentines Day.

Dance Class

Everyone should read "Ballerina Dreams: a true story" by Lauren Thompson. Have a tissue handy. It is the story of a ballet dance teacher who makes dreams come true for little girls with special needs who want to dance. I believe it is the same program in New York that was highlighted on the NBC nightly news one evening (people making a difference segment?) and made the rounds of my special needs parenting listservs via YouTube link.

Well, thankfully, someone in Columbus Ohio decided to make dreams come true here, too. A physical therapist at the local Easter Seals center decided that dance class should be made available for kids with special needs. It isn't ballet - more of a jazzy dance style, and many of the girls (boys are welcome too) wear tap shoes. Some use a walker or gait trainer, some dance on their own. I actually sit on a rolling stool and hold my daughter so she can participate as she is able - it is more of a workout for me than it is for her (which is OK).

The class is held in the spring and fall, with a recital at the end. The teacher presented each girl with a white rose at the recital. The world is opening up for kids with special needs these days.
I am continually grateful.