On to first grade!

Well, I can't believe that the whole school year, plus one month of summer has flown by and I haven't posted again about kindergarten. It was a great year. Our IEP meeting went smoothly and I'm very happy with the results. After the turnover in the aide position, we got a fabulous person in the Spring who was so worth waiting for! She and Erica really connected - immediately. She seems intuitively to know how to motivate her and of what she is capable. Noelle gets her to wear her glasses. Noelle gets her to write her stories on the computer (not sure why she decided she didn't want to do this - seems like most kids would jump at the chance). Noelle gets her to USE THE TOILET!!!!! She has had dry days now and we are actually dreaming of one day saying goodbye to diapers. Most importantly, Noelle gets her out of her chair and moving... AND she gets her talking and interacting with the other kids in class, who now feel comfortable asking questions about her and therefore are more comfortable treating her like a peer. We are thrilled that Noelle will follow her to first grade, and I just know it will be another great year.

life balance

A fun thing that is moving around Facebook these days is "25 Random Things About Me." I saw it and immediately starting thinking about what I would say if I were tagged to make my own list. And, sure enough, I was. I really like reading little obscure factoids about people I already know. In writing my own list, I reinforced something I already knew about myself. It's really hard for me to be brief and to the point. Almost every random thing I wrote turned into a little story. I'm still finishing up the list, and I actually plan to go back and edit it to remove some of the explanatory storytelling from each item before I post it to my Facebook profile. I was actually putting about 5 or 6 random facts into each by expanding on the initial fact. It's 25 random facts, after all, not 125! There's nothing wrong with just putting a fact out there without giving the whole background to it. Let people wonder, right?

As I was nearing the end of my list of random facts, I noticed that very few mentions were made of my special needs parent role. I do make a concerted effort to maintain a balance between that and other aspects of my identity. From talking with other special needs parents, I know that it can take over your life. Some say that they no longer have friends outside of the disability community because their "old" friends just don't understand what their life is like now. I feel extremely fortunate to have friends and family who genuinely care about and understand Erica's challenges and appropriately rejoice with me in her accomplishments. And I actively pursue activities that renew my ties with those friends - a book discussion group, my scrapbooking hobby, a Bible study group and cruising around on Facebook, among others. I chose to make my blog ABOUT this particular aspect of my life, and I think that studied reflection is also healthy for me and contributes in a positive way to my life balance.

Whatever it is that consumes a large portion of your life and your identity, I pray that you find the right balance to maintain healthy relationships with the people you love and a positive outlook on life in general.

Josh Blue

I went to the comedy club last night with a friend and fellow CP parent to see Josh Blue, a comedian who has CP and a winner on Last Comic Standing. He was truly hilarious! I just loved his routine. Coincidentally, seated across the table from us were two more CP parents. I wonder how many of "us" were there? As when I cheered for Abby Curran in the Miss USA pageant, I am always thrilled to see young people who haven't let their disability stop them from achieving their dreams.

Abby Curran story
Josh Blue YouTube clip

Holiday tag

Well, I'm lucky I found this even while it's still December, that's how seldom I post to my blog or catch up on those I follow! Here are my answers to a holiday meme from Netter... but I don't think I'll tag anyone else, because I only have links to about 5 blogs total and those folks have probably already been tagged!

Tag - You're It!

Post this on your blog, answer and then tag 5 other people.....ready....GO!

1) Wrapping paper or gift bags? Wrapping paper, mostly, unless it's a gift that is a weird size or shape and I don't have a box in which it fits. (Or if I'm in a big hurry! LOL)

2) Real tree or artificial? Artificial. Pre-lit. If I could take it down fully decorated and put it back up the same way next year I would. I'm not big on decorating the tree.

3) When do you put up the tree? After Thanksgiving, as soon as I get the energy to tackle it. Some Christmas carols and a stiff drink help! This year I let Natalie help and I didn't even "fix" the ornament placement she chose (she is three, so picture that!)
4) When do you take the tree down? After Christmas, as soon as I get the energy to tackle it. Does that sound familiar?

5) Do you like eggnog? No. Ick.

6) Favorite gift received as a child? Wow. I'm not sure I could pinpoint that. A doll that was life-sized and walked was a favorite, but she broke quite soon after Christmas. A Spirograph? An oversized Barbie doll head with makeup and hair accessories?

7) Hardest person to buy for? My brother-in-law.

8) Easiest person to buy for? Natalie. (Again, she's three. How easy is that?)

9) Do you have a nativity scene? Yes, it was my mom's. I love having it!

10) Worst Christmas gift you ever received? Believe it or not, I can't recall any really bad ones. Maybe some bath product in a scent that made me sneeze...

11) Favorite Christmas Movie? I prefer the short specials - love Charlie Brown!!

12) Favorite Christmas song? The Christmas song! (Chestnusts roasting...)

13) Travel at Christmas or stay home? We travel back to our hometown of Medina, in northeast Ohio.

14) Have you ever recycled a Christmas present? Oh, sure.

15) Favorite ornament theme or color? don't have one

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!