Doin'?

Having a conversation with Nicky is a bit like a game of charades. He communicates with a combination of words, signs, gestures and acting out his point. His favorite movie right now is "Toy Story" and he's quite good at speaking the title. It's hard to resist him when he asks for it so well. Lately, he's taken to acting out the shows and movies he know well. Both while watching and afterward. He had us in stitches tonight with his imitation of Sid's dog Scud, pretending to be Woody lassoing, driving RC, and Buzz's "Too infinity and beyond."

His favorite conversation starter (and continuer) is "Doin'?" as in "what are you doing?" He'll ask it while I'm driving, cooking, etc. He'll ask it about characters in picture books. He'll ask his siblings. His version of "why." Tonight, he opened the bathroom door (another recent obsession - opening doors) and asked me "Doin'?" Sigh, no privacy anymore.

Loss

A mom on one of my due date lists died yesterday. It's hard to explain the loss. She wasn't part of my day to day REAL LIFE. But, she'd posted often on the list. I'll miss her voice. I grieve for her but, more importantly, for her children. God's peace Kristine.

LOL

anne\'s originals -- [noun]: A level headed person who always makes the wrong decision 'How will you be defined in the dictionary?' at QuizGalaxy.com

Neat Blog

I came across Paul's Blog, recently after finding his sister Jenna's petition.

Poor neglected blog

Sorry I've been absent. Typical end of the school year craziness plus some stress over Nicky's placement for next year, Nate's First Communion, Grandmother visiting and having a new puppy. We had the final IEP meeting (and I mean final, IEPs in our district are definitely a living and breathing document) of the year this morning and signed the papers to move Nicky from his current school to the preschool special ed center. We've agonized over the decision but I left the meeting happy & excited for next year. As part of the process we had a meeting with the director of elementary special ed and came away impressed with her commitment to having special ed kids in regular ed classrooms.

We also declined summer school instead I'm looking for private PT & ST. Nicky can now stand on his own if you trick him and is walking well holding onto one hand. Hopefully, he'll be walking by the time school starts.

Friends make teen feel like royalty

By GRACIE BONDS STAPLES
The Atlanta Journal-Constitution
Published on: 04/18/07

Melanie Barrett was a little girl, no more than 5 years old, when she first dreamt of being crowned prom queen.

It was an unlikely dream for a girl like Melanie, but anything can happen when you believe.

"I'm the queen," she often announced to her parents while growing up. "I'm the queen."

As she aged, her pronouncements intensified until finally last year Melanie was a junior at Pierce County High School and prom queen was within her reach. She got gussied up and went to the prom that year with her father on her arm and her dream neatly tucked in her heart. She would be queen.

But when the votes were tallied that night, Melanie Barrett hadn't even been nominated. She was crushed.

A classmate at Pierce tried her best to get Melanie a place in the homecoming parade, a sort of consolation prize, but even that didn't happen. There just wasn't enough time to get a convertible.

Carol Kodobocz, Melanie's mother, put her hopes on the senior year prom. Maybe then the odds would be different.

For most of her life, Melanie had managed to defy the odds stacked against her. Doctors diagnosed her with Down syndrome the day she was born at South Fulton Hospital in Atlanta; and when she was just 2, they discovered she had leukemia.

"They told us she wouldn't live through the weekend," Kodobocz said.

They forgot to tell Melanie that, of course, and so after two years of chemotherapy, she was cancer-free and ready to take on the world.

Three years ago, their family moved from McDonough on the south side of Atlanta to Blackshear in the southeastern corner of Georgia, thrusting Melanie into a whole new world, but she made friends quickly, especially in her home economics classes.

Each year, the seniors would leave Melanie behind, but the sweet girl with the sky-blue eyes had stolen their hearts. During breaks from college, they always found a moment to stop by to see Melanie. In between, they called or wrote to her on MySpace.

In all that time, Melanie held on to her dream. At 18, she was a senior, and now it was her turn. She would be the Pierce County High School Prom Queen.

This time, though, she couldn't have her father go with her. She wanted a "real date." Will you go with me? she asked Stephen Wall.

Peggy and Bill Wall adopted Stephen when he was only 2 days old. At 6 months old, doctors diagnosed him with cerebral palsy, a neurological disorder.

"I never imagined we'd be facing such terrible news," said Peggy Wall.

That afternoon, she and Stephen's father took a walk to discuss the diagnosis and their little boy's future. It was then, she said, that they released all their dreams for a "normal" life. Stephen would never drive. He would never go to college. He would never date.

He needed a wheelchair to navigate the world, but Stephen quickly claimed his place. He made friends just as quickly, becoming a favorite son of Pierce County High.

Students loved him as much as they loved Melanie. He loves driving golf carts and music, especially the Gaither Vocal Band.

Yes, the 18-year-old told Melanie. He'd be delighted to attend the prom with her.

Meanwhile, a group of students began working behind the scenes to make Melanie's dream come true.

Maybe, if her parents were willing to provide the head gear, Melanie and Stephen could be crowned the principal's king and queen, a special honor. Everyone thought it was a lovely idea.

On March 24, the night of the senior prom, Melanie and Stephen arrived at school along with a 100 or so other classmates dressed to the nines. Stephen in his black tux, Melanie in a sky-blue gown that matched her eyes.

It was a high moment in their lives. Too often, students with disabilities have to stay at home on prom night. Seldom does an entire school embrace them, but Pierce County High was different.

Sometime around 10 that night, the festivities kicked in high gear. Students lined up for the annual senior walk, when each couple has their moment in the spotlight.

Close to midnight, the music stopped. It was time to announce the 2007 court. Out of the eight students, four boys and four girls, only two of them would be king and queen.

A hush fell over the school gym. The announcer named the princes and princesses first and moved quickly to the king and queen.

Carol Kodobocz was sure he'd forgotten Melanie and Stephen.

Then she heard him call Melanie's name. The school gym filled with applause.

Noticing the confusion on Kodobocz's face, Melanie's teacher assured Carol that Melanie had really won. They voted her queen!

The announcer called Stephen's name next.

Did they vote for him, too? Kodobocz asked.

For as long as she could remember, she'd craved acceptance for her little girl, for all special needs kids. Now Kodobocz had it in abundance.

Melanie Barrett and Stephen Wall were indeed the Pierce County High School Prom Queen and King. Out of 180 seniors, only seven had not voted in their favor.

For the first time that night, Stephen got out of his wheelchair and, on his knees, danced with Melanie.

At breakfast the next morning, Melanie wore the crown and the sash announcing her victory. Instead of cold cereal, she demanded bacon and eggs, and when her father suggested she clean the kitchen, she balked.

"Excuse me," she said, "Queen here."

A Solution to Childcare Woes?

Nope, it's a home for our new puppy Daisy

Nate-isms

"You don't care what I want, you only care about what's best for me."
-Usually shouted at the top of the lungs when told it's time to stop playing video games or any other fun activity

"I think I have a VCR memory, but the tape is only a few seconds long, and it works better if I close my eyes."
-Following a discusion of photographic memory

"You didn't know that tarantulas take 4 to 8 years to mature, and you even went to college."
-After a unit at school on spiders

Progress?

Lately, Nicky has been standing and cruising the furniture a lot more on his own. This is a major improvement for a child who would hold his legs out at a 90 degree angle rather than put them on the floor.

There is hope!

21 Things I Love About Nicky

In honor of World Down Syndrome Day 3/21

1. His eyes, they are the most remarkable color, hazel but with brown around the pupil and blue around the outside.
2. His laugh.
3. The way he says "Cool" at things that amaze him.
4. The way he says "Whoa" when were running to fast.
5. The way he crosses his arms & turns his head away to express displeasure.
6. Watching him try to do whatever Nate is doing.
7. That gap between his toes, so kissable.
8. His determination to do things Nicky's way in Nicky's time.
9. Watching Nicky groove to a beat.
10. Listening to him sing "Twinkle, Twinkle, little star."
11. Watching him sing "Itsy, Bitsy, Spider."
12. Listening to Nicky say "Wow" when something amazes him.
13. Those hugs, he melts right into you and that little pat on the shoulder.
14. That Nicky loves sleep almost as much as Mommy & Daddy.
15. Tucking him into the crib, how he attacks his pillow with such gusto.
16. When he says "Bob, DVD, again please."
17. Waking up to happy shouts & singing every morning.
18. Reading "Green Eggs and Ham" for the 100th time.
19. Peaking in, to see Nicky, face down, asleep on a book.
20. Hearing him laugh at something Nate has done.
21. Just having him a part of our lives and all the wonderful people he's brought.

Encounters

We went out to dinner tonight to Smokey Bones. As we were walking in another family was coming out. After our kids had tromped in and theirs had tromped out there was that awkward moment when the adults try to figure out who should go next. The father paused a second too long. I looked up and in his arms was a beautiful little girl with DS. He was looking at Nicky and I understood why. A look of recognition passed between us and the moment was broken.

I never know what to say when I encounter another family with a child with DS. Certainly, I don't want to be wrong but I always feel I should say something, or something more.

As we were walking out we ran into a family we know from the kids' school. They have twin daughters in M.E.'s class and a son with DS who's almost 14. We chatted a few minutes and drove home. On the way home it hit me that 30 or so years ago, all three of these children might well have been in an institution. So good to be living now.

'Cary

Scary, or as Nicky would say 'Cary

Say Yes

There are several kids in Nicky's class who are bilingual or only speak Spanish and Nicky seems to have picked up a word or two.

Mom: "Nicky, do you want a snack?"

Nicky: (Nods his head.)

Mom: "Nicky, use your words, say yes if you want a snack."

Nicky: "Si" then makes the sign for cookies.

Didn't there used to be a house there?

Our nextdoor neighbors have decided to go a step beyond the tear-down-to-the-studs and/or add-on remodel. They've torn down there house and are building a new larger house. The house was torn down in under two hours more than a month ago (to the great enjoyment of most of the elementary schoolage kids in the neighborhood.) Now, it's a great conversation topic when we're out in the yard. I have to squelch my natural smart alec tendencies when asked "Didn't there used to be a house there?"

Like..

"Oh, my god, you're right, I wonder where it went?"
or
"House, what house? there was never a house there."

Then there was the woman who was walking by last week and insisted that she'd been out walking a few days before and the house was still there. Now, it's now my house, but I do remember when it came down, it was a pretty big event.

Our neighborhood is a close knit, established, one and the reactions of the pretty much cover the spectrum: anger, envy, disbelief, worry about taxes going up, worrying about resale value, etc. I'm sure things will settle down soon.

Nice article

http://www.nationalgeographic.com/ngkids/0612/index.html

Melissa Riggio is the daughter of Steve Riggio, the CEO of Barnes & Noble

I have a friend who....

I first discovered online communities about 13 years ago looking for answers after suffering 4 miscarriages. In the infertility groups on usenet I found a community of women who were in the same situation. Because, sadly, miscarriage and infertility isn't something that's often talked in "real life" I found the needed support online.

When I became pregnant with my daughter I joined a "due date list", May '96 to be exact. May '96 is a group of, mostly women, who were due with babies in May 1996. They are still a part of my life today, more than 11 years later. Checking email is a part of my routine, and these women have become a part of my life. With this group, and the Oct '98 moms, I've shared the challenges and joys of being a mom. It's become common in our house when faced with a dilemma to "Ask the May Moms." When talking to real life friends I'll often say "I have a friend who..." and the friend is a May or Oct mom who's experienced something similar.

When Nicky was born friends from my list sent gifts and even chipped in to hire a personal chef to provide meals for my family. When another mom was diagnosed with breast cancer we made a quilt. When a mom was displaced because of Katrina we sent gift cards, clothing, & toys. When a husband committed suicide we sent flowers & gifts. When a mom died due to pregnancy we mourned together. We've weathered all the things "real life" friends do.

Sadly, I hadn't found that for Nicky. I joined a due date list but when he was born I unsubbed without ever telling why. I tried a few existing lists and found some support but in one case the parents on that list mostly had older kids and another there was just too much arguing and flaming. But, I'm starting to find it through the bloggers I read. There are a number out there with kids close to Nicky's age. Or their kids are younger, but the parents are experiencing many of the things I have.

Anyway, thanks to all you bloggers out there!

Re-Adjustments

When I was pregnant with Nicky and found out he was a boy, I thought I knew what to expect. We already had Nate who is a fall boy. Following Nate's trail Nicky's early life was mapped out, where he'd go to preschool, what classes he'd be in perhaps even the teachers would be the same. The first adjustment came when Nicky was born 3 days before his due date instead of a week after. Oh, yeah, and that little DS thing. But, I thought he'd still go to the same preschool, just a little later and take things slower. But he'd still go there and then onto the same elementary school as the big kids. Nicky turns 3 and still isn't walking, the preschool won't take him. So he's in a self contained classroom. Something, I didn't want. But he's happy there and doing well.

We had an IEP meeting this morning. The good news was he's met many of the goals we set in September and they need to be revised. Part of the meeting was to look at inclusion options. The bad news is he doesn't meet the criteria for the preschool inclusion. Another readjustment. Wondering if he'll go to the same elementary school as Nate or will he still be stuck in self contained. He needs more maturity, needs to be potty trained, to interact more with his peers. He's about half-way there on the list of criteria. There's always hope, he has 6 months until the next school year starts and 18 until Kindergarten.

He's also showing his independence in ways that doesn't please his therapists & teachers. Throwing things when he doesn't want to do a task and/or scooting away. There was talk of an FBA and a BIP. Not, yet. He's definitely got a mind of his own.

Tonight, with a bit of prompting he said "Want water please, mama." And "thank you mama" with no prompting when he got the water. Also saying "Candy" and "Peppermint patty" very clearly. It's all about motivation.

More FOs

Sorry, I've been neglecting the blog. Anyway, here are a bunch of things I've finished recently.

Some yarn dyed with Wilton's food color







Adamas Shawl from Knit Picks








Cotton Washcloth












Diamond Fantasy Washcloth adapted from Sivia Harding's Diamond Fantasy shawl,










prototype for a baby blanket








Scarf, hat, & mittens
My own design Colourmart DK cashmere















Nora Gaughan from the Winter 01/02 Interweave knits
Yarn: Lion Brand Woolease

Connections

For Christmas, Grandma completed Nicky's collection of Signing Time Videos. We've been watching them over the past month or so. Last night, we were looking at Nicky's big book of things that go. When we got to the fire engine page, Nicky made the sign for Fireman! I'm just thrilled, I love it when he makes connections between to situations. I also love, love, love Signing Time

Walking

Tammy, Nicky is 4 so he should be walking, but he's not. Our second PT (one of the good ones) had some facts & figures. The median age for a child with DS walking is 2, so half of the kids are walking by then. And 90% are by three.

When Nicky was just pulling up at age 2, I held onto the 90% figure. Then he wasn't walking by 3, and then 4... At this point he's really close. He walks well holding onto our fingers. And he has a walker at school that he runs down the halls in and away from his teachers.

He was mobile relatively early, rolling at 6 weeks and commando crawling before a year. The early mobility may have hurt in that he could get where he wanted to without walking. At this point he can scoot on his bottom faster than I can walk.

He did have some pretty major sensory issues with his feet. It wasn't that long ago, if we picked him up by the arms, he'd put his feet out straight in front just like a gymnast on the still rings. Because of this he has amazing stomach muscles and strong arms from the scooting. Hmm, Special Olympics here we come!

I do know that he will walk when he's ready but as Jennifer said you wish you could look back from the future.

Things are better although, I think we're in for a battle with the school about Nicky's placement for next year. The lead teacher tried to tell me the type of program I want doesn't exist and then that we're not in the right attendance area.