Monday, November 19, 2007
A lot of cleaning time is really just picking up, if I could just get the kids to pick up after themselves, life would be better. In September, I did a major declutter but I noticed things are starting to junk up again. It's mostly stuff being thrown in the laundry room or on the dining room table rather than being put away.
I'll get to it, after Christmas? We'll see.
Sunday, November 18, 2007
Wednesday, November 14, 2007
Friday, October 05, 2007
Important life skills for sure.
Thursday, October 04, 2007
Wednesday, October 03, 2007
Don't accidently add it to the bleach dispenser instead of the fabric softener dispenser.
It adds the vinegar in with the soap, not the rinse water.
Resulting in lots and lots and lots and lots of suds. So much they were coming out the soap dispenser.
Also, don't then add the vinegar to the fabric softener dispenser in addition to vinegar you've already put in.
Three or maybe four cycles later my towels are really clean.
Tuesday, October 02, 2007
Oh, and maternal cells cross into the fetus, so our children carry little bits of us too.
Monday, October 01, 2007
Did you know that October is Down Syndrome Awareness Month?
It is. In honor of it I signed my family up for the Atlanta Buddy Walk.
Oh, and what's with the button? Trish over at Unringing the Bell has issued a challenge to bloggers to blog every day in October in honor of Down Syndrome Awareness. I'll try. We'll see if I make it.
Saturday, September 29, 2007
My totals so far:
7 bags to St. Vincent de Paul, my clothes, kid clothes & toys and some household goods
4 bags of trash, broken toys, etc.
2 bags of plastic junk recycled
1 box of clothes to a consignment sale, netted $39.41
In the course of de-cluttering, I came across this:
It was started by my great-grandmother in the 1940s, my grandmother did some of the quilting as did my mom and I was working on it. But, I'm not sure whether to look at it as a family heirloom or a symbol of the inter-generational baggage we all pass down to our kids.
I come from a long line of hoarders. When my grandfather died in 1981, my parents donated chemical engineering journals from the 1950s to the '80s to the college where my grandfather had taught. Don't know if the college actually kept them or were polite. My other grandmother had a story about visiting her prospective in-laws for the first time and having to navigate through piles of old newspapers. Her mother questioned the wisdom of marrying into such a family.
Sigh, sometime I think it's a losing battle.
Next to tackle the basement storeroom, where, not kidding, there is an old furnace we kept because it was only 8 years old and we might someday use it. Now, it's 17 years old and we have to pay to have it hauled away. Scary, really really scary...
Sunday, September 23, 2007
Saturday, September 22, 2007
She (at least Nate thought she was a she based on eye color) decided to try between the next set of pickets:
No luck there either...
Nate ended up giving her a helping hand
Tuesday, September 18, 2007
Saturday, August 18, 2007
Nicky was oblivious and had thought it was all just good fun. I, on the other hand, was very upset, visibly, so that I couldn't do much more than thank the boys for apologizing. If Nicky was a typical kid, the incident probably would have passed without notice or perhaps escalated with Nicky hurling his own insults. But, he's not, and this is the first time, I've experienced unpleasantness on his behalf.
Could the incident have been handled any differently? The boys' father was so furious I'm not sure they understood why their father were so angry. Not having overheard what he said to the, did he explain that Nicky has a disability? Should I have said anything? And, how to prepare for the next unpleasantness of this sort?
Monday, August 13, 2007
First Nicky got on his bus:
Then we walked Nate to school:
And M.E. almost missed her bus, or so we thought (it comes around a second time at the specified time)
Friday, August 10, 2007
Days away: 13
Times Nate climbed Mt. Pisgah: 5
Dogs: 1 (Daisy)
Dead batteries: 1
Strained backs: 1(mine)
Before school started we made our annual trek to Michigan. A few days in Ann Arbor at Grandma's house, a week on Beaver Island and a few more days at Grandma's. Beaver Island is one of my all time favorite places on earth. My father is buried there and we went on our honeymoon there. It's a bit quirky,once home to a colony founded by Mormon, "King" James Strang with a year round population of about 300 which swells to 10 times that in the summer, things definitely operate on island time. Because it is somewhat difficult to get to there is a lot of unspoiled beauty. My family started visiting when I was in college and it's now become the trip my kids look forward to every year.
A family of turkeys strolling accross the front yard
Nate preparing to climb Mt. Pisgah again
We left a treasure in the tree for our friends Katie, Laura, Scott, and Matthew
Enjoying the sun and sand
Even Grandma and Daisy enjoyed the beach
Friday, July 13, 2007
First things I have learned in toilet training Nicky:
- Nicky can hold his urine for over two hours or until underwear or a diaper are put on.
- Dogs are good at cleaning up BM and seem to like the taste.
- While his siblings enjoy potty humor they are grossed out by potty accidents.
- Warm water on hands really does trigger urination.
- Staying home most of the day is really boring.
I've been letting Nicky hang out around the house bottom-less most mornings (much to the chagrin of big sis). Then I've been putting him on the potty at intervals. We've had some moderate success and some major failures. This morning started out with a pee accident. Then about an hour later Nicky took his walker into the bathroom. When I went in after him has said "potty". Put him on the potty and he had a BM. Hooray!!! Call Daddy. Give Nicky a cookie
Less than an hour later again he says "potty". Put him on, he sits a while, strains a bit, says "all done". Not five minutes later he had another BM, this time on the porch (this is where the dog comes in.) SIGH. Then about 20 minutes later another BM. SIGH, SIGH.
And, yes he did have three BMs in less than two hours. That's part of the reason I'm pushing for potty training. We are in the midst of a work-up for Celiac. He had the blood work yesterday and I took a stool sample in today. (Had lots of collection opportunities.) Looking over Nicky's record, he hasn't gained any weight in the past 18 months, but has grown almost 2 inches. This is somewhat typical for toddlers but he's at the top of the DS charts for height but falling on the weight charts.
One of these days I will post some knitting. Been doing a fair amount, but lots of startitis.
Monday, July 09, 2007
"And the kids?"
"Fine, good, great"
"How's Nicky doing?"
Fine, good, great..
Most days I can say it and really mean it. Things are fine, good, great even. Lots of joy. But some days they just aren't and never will be. My child has disability, he's mentally retarded, how can things be really great?
How do you communicate to a casual acquaintance or even a good friend what it's really like? Mostly life's good but the dips in the road can be steep.
Been here before. Seems to be the latter part of the summer. Is it just having more time for reflection? The approach of Nicky's birthday? All the plans for the summer? This is going to be the summer Nicky walks, or has been for the past 3 summers. The approach of school and all the expected changes?
Looking forward to fall.
Sunday, July 08, 2007
Saturday, July 07, 2007
Here are a bunch of pictures, from before school ended that I've been meaning to post.
All three after Nate's First Communion, they do clean up well
M.E. after Fifth Grade Graduation
10U Softball Champs:
Costal League Champs
Nicky and cousin Jenny
Friday, July 06, 2007
We were at a neighborhood Mexican restaurant recently. Nicky and I walked out into the lobby while the others finished their meals. There was a boy about 3 years old sitting on a bench and Nicky crawled over and then climbed up next to the boy. N started stimming. The boy took one look at Nicky, climbed down and hid behind his mother.
Sigh, perhaps I was wrong and the boy wasn't frightened by Nicky. I hope so. I so want him to have friendships with other children and not scare them. He was certainly well liked by the other children at school. They were always glad to see him. And the children in our neighborhood want to play with him.
Thursday, July 05, 2007
Ever since the Boston Market near us closed we've been craving rotisserie chicken. My Mother's Day/Birthday gift was a new grill with a rotisserie attachment and rotisserie radiant burner. We've taken it out for a test-drive a few times. This was our result for Independence day dinner. I stuffed two chickens with cut-up lemon, and sage and rosemary from our garden. Rubbed the outsides with Masterpiece bar-b-cue rub. Let the grill do it's thing for nearly two hours and this was the result. Add some slaw and a few veggies. Voila! Dinner. One that everyone will eat. Believe me, that's an accomplishment in this house.
I started going to Church again, because after all, couldn't ask M.E. to go alone. Suddenly, for the first time church was enjoyable something I looked forward to. It was a return home, to something familiar. Throughout the years I wasn't attending mass, I still felt spiritual but not necessarily religious. There are things about the Catholic hierarchy and organized religion that I don't totally believe. But, I love the comfort of the familiar ritual.
Mother-in-law's memorial service was held in the Presbyterian church she and FIL have attended for years. I was a nice service, but somewhat unfamiliar. It reminded me again of the comfort of familiar ritual in times of loss and sadness. I don't know what my children will believe but I hope at some future time they can have the same comfort in religion and ritual.
*I am reminded of the joke about the man in the flood who finally gets to heaven and asks G-d why he didn't save him. And G-d answers but I sent the neighbor in the boat, the helicopter, etc. That was one of our messages
The other step to growing up is getting rid of naps. Currently, he'll nap 2 to 3 hours in the afternoon, but can do just as well without. When we were traveling last week he only napped when in his bed. Also, the last few times he's had a nap he has a tough time falling asleep. Maybe it's time.
Wednesday, July 04, 2007
She had a massive heart attack nearly 16 years ago, so we were lucky to have those extra 16 years. Which meant seeing 2 sons get married and the birth of 6 grandchildren. I'm not sure she totally understood all of Nicky's issues but she was one of his champions.
My list friend who passed away last month died from a heart attack. She'd been having crushing chest pain which at least one Doctor thought might be an anxiety attack.
Did you know?
- That a coronary angiogram may not spot the more diffuse buildup of plaques that often forms in the smaller coronary arteries of women's hearts.
- Heart disease is the leading cause of death in women, and kills 8 times more women every year than breast cancer.
- Women tend to show up in the emergency rooms after much heart damage has already occurred because their symptoms are not those typically associated with a heart attack.
- Recent statistics have shown that the rate of heart disease has declined in men but not as much in women.
Signs of a heart attack in women:
- Neck, shoulder, upper back or abdominal discomfort
- Shortness of breath
- Nausea or vomiting
- Lightheadedness or dizziness
- Unusual fatigue
Not the crushing chest pain that men typically get.
Thursday, June 21, 2007
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.
Tuesday, June 05, 2007
Monday, May 28, 2007
Tuesday, May 08, 2007
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.
Thursday, April 19, 2007
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."
Monday, April 09, 2007
Tuesday, March 27, 2007
-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
Sunday, March 25, 2007
Wednesday, March 21, 2007
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.
Friday, March 16, 2007
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.
Thursday, March 15, 2007
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.
Sunday, March 04, 2007
"Oh, my god, you're right, I wonder where it went?"
"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.
Tuesday, February 20, 2007
Friday, February 16, 2007
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!
Tuesday, February 13, 2007
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.
Some yarn dyed with Wilton's food color
Adamas Shawl from Knit Picks
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
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
Sunday, January 28, 2007
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.
Monday, January 22, 2007
We are starting to make plans for Nicky's next school year. Right now he's in a self contained special ed classroom. He's doing very well, but there are a number of very verbal kids in his class. I want him to at least try inclusion. But, his teacher says he doesn't talk much during circle time but will in one-on-one situations. If we put him in an inclusion setting will he shut down or will he thrive? I think there will also be a bit of resistance by the powers that be since he's not walking yet.
Wondering if he'll ever walk. I know he's made progress since last year but he still doesn't want to walk. Obsessing if we'd had a better PT in the beginning, if he'd be walking now. Of course, until recently, he'd tuck his legs under or stick them straight out in front rather than putting them on the floor.
No matter the school situation, I'll have 3 kids in 3 different schools. I know this would have happened anyway but this leads too..
Obsessing about the 3 miscarriages between Nate & Nicky. If I hadn't lost the first s/he would be in kindergarten now, the one chance to have 3 kids in the same school.
And finally, my family is planning a reunion for next summer. But they are planning it for the week before our school starts, when I'd have to register for the three schools. Getting a bit of grief about it. But part of me is relieved because my brothers have boys close to Nicky's age and my cousins do to. Seeing them is somewhat bittersweet.
Sigh, ok, enough.
Sunday, January 14, 2007
What is your level of knitting experience?
Wednesday, January 10, 2007
Tuesday, January 09, 2007
He's also figured out the Toddler Rules. Everything he sees is now "mine." We've taught the big kids to trade rather than taking things out of his hands. Now, if you have something he wants, he'll first try yelling "mine", then if that doesn't work, he'll bring you something and say "trade".
And he's using a lot more two and three word phrases such as:
Help me (and the constant variation "help me mama")
Bob DVD TV
I don't want to (picked up from school)
I am so pleased with these developments. For too long he was so passive, not getting upset when something was taken away. And the trading really shows the start of reasoning.
Sunday, January 07, 2007
For my Mom & Knittalk swapmate
For my neighbor an oven mitt & pot holder
For M.E.'s teacher who's an Ohio State Alum
A whole batch, the orange was for Nate's teacher a Florida State Fan