We had Frankie's annual EIP meeting last week, and the transition to kindergarten part, as well! First, I have to say I cannot believe he will be starting kindergarten in the fall!! How fast time goes and I feel sad that my "baby" will be in school all day, and riding the bus. : )
The meeting went quite well! He will continue with his TVI services and O&M. He will be using his cane more, to and from the bus, which makes me a little sad. He will also get a special ed. teacher in his classroom a few times a week to help him in the class, which I was happy about.
There will also be services in place to keep him safe. He will have someone helping on and off the bus, navigating the halls, lunch and recess.
So it feels good to have the services in place, but bittersweet that he needs them at all!
Friday, February 4, 2011
Thursday, February 3, 2011
Thankful Thursday!
Dinner at Vellos with the kids and friends!
Getting Frankie's IEP finalized and questions answered.
Frankie playing and having fun with his friends. : )
My warm house.
Getting Frankie's IEP finalized and questions answered.
Frankie playing and having fun with his friends. : )
My warm house.
Saturday, January 8, 2011
My blog featured on Specialchildren.about.com!!
I posted the article, earlier in the week, about the Roy family who is trying to get an American Girl doll made with albinism! Frankie and Kalli met each other at Perkins school a few years back and we had gone to the Big Apple Circus with them, as well.
Please consider writing a letter and sending it to vote4kalli@gmail.com
Here is the post from specialchildren.about.com that mentions the family and my blog post about them!!
http://specialchildren.about.com/b/2011/01/06/girls-lobbying-for-american-girl-doll-with-albinism.htm?r=et
Terri's Special Children Blog
By Terri Mauro, About.com Guide since 2004
Girls Lobbying for American Girl Doll With Albinism
Thursday January 6, 2011
Get Involved: How cool would an American Girl doll with albinism be? One Massachusetts family is trying to find out. According to a post on the blog Parenting, Albinism and Boston Kids' Activities, Kalli Roy would like to have a customized doll just like her sisters do, but because she has albinism, that's going to involve a little more than selecting from the usual hair and eye color choices. Her sisters have started a letter-writing campaign to get the American Girl company to create a doll for Kalli and others like her -- a doll that could also send the message that kids with albinism are just kids, not some evil character from a movie. If you'd like to join their campaign, the blog post suggests sending your letter to vote4kalli@gmail.com.
Please consider writing a letter and sending it to vote4kalli@gmail.com
Here is the post from specialchildren.about.com that mentions the family and my blog post about them!!
http://specialchildren.about.com/b/2011/01/06/girls-lobbying-for-american-girl-doll-with-albinism.htm?r=et
Terri's Special Children Blog
By Terri Mauro, About.com Guide since 2004
Girls Lobbying for American Girl Doll With Albinism
Thursday January 6, 2011
Get Involved: How cool would an American Girl doll with albinism be? One Massachusetts family is trying to find out. According to a post on the blog Parenting, Albinism and Boston Kids' Activities, Kalli Roy would like to have a customized doll just like her sisters do, but because she has albinism, that's going to involve a little more than selecting from the usual hair and eye color choices. Her sisters have started a letter-writing campaign to get the American Girl company to create a doll for Kalli and others like her -- a doll that could also send the message that kids with albinism are just kids, not some evil character from a movie. If you'd like to join their campaign, the blog post suggests sending your letter to vote4kalli@gmail.com.
Wednesday, January 5, 2011
What I Like about Winter
Hot chocolate
Fires in the fireplace; watching them, hearing the crackle and feeling the warmth!
Playing games with the kids by the fire!
Snuggling
Hot chocolate
Ice skating
Playing in the snow and coming in to hot chocolate with marshmallows
Ice skating competitions for Lizzy
Frankie shoveling
Selling Girl Scout cookies
Eating GS cookies!
Baking
Making warm meals!
Soup
Reading in bed where it's warm
Fires in the fireplace; watching them, hearing the crackle and feeling the warmth!
Playing games with the kids by the fire!
Snuggling
Hot chocolate
Ice skating
Playing in the snow and coming in to hot chocolate with marshmallows
Ice skating competitions for Lizzy
Frankie shoveling
Selling Girl Scout cookies
Eating GS cookies!
Baking
Making warm meals!
Soup
Reading in bed where it's warm
Send a Letter to American Girl!!
We have met Kalli at Perkins, she is Frankie's age! Please consider writing a letter, Lizzy is working on hers now!
January 5, 2011
Salem sisters work to 'cure ignorance'
By Jillian Jorgensen
jjorgensen@eagletribune.com The Eagle Tribune Wed Jan 05, 2011, 12:16 AM EST
SALEM — Kalli Roy's two older sisters have American Girl dolls customized to look just like them. But getting one for Kalli is more difficult than picking out the right facial details from the doll catalog.
Kalli, 4, has albinism, an inherited genetic condition that means she has little or no pigment in her eyes, skin or hair. Her eyes appear violet and her vision is impaired, but that didn't stop her from sprinting around her house one recent evening.
Her sisters, Kaila, 10, and Kiana, 8, got the idea to ask the American Girl company to make a doll that looks like their sister. But their request isn't just so their sister could have a familiar toy.
They want "to cure ignorance," Kaila said.
The dolls come with books telling the tales of pre-teens from various points in history through the modern day. The girls hope a "Kalli Frances" doll and book would educate those who sometimes stare at Kalli or make mean comments.
At a summer camp, Kiana and Kaila were playing with a boy they had just met. They asked if he wanted to play with their sister, too.
"He said, 'No, she's a freak. She doesn't look like us. We can't play with her,'" Kiana said.
"Did I cry?" Kalli asked, from the other side of the table.
Kiana told Kalli she didn't cry, because she hadn't heard the exchange.
"What do you say when people stare at you or say bad things?" the girls' mother, Tricia, asked Kalli.
"I'm fabulous," Kalli replied.
The girls decided to contact American Girl on their own, Tricia Roy said, and the company urged them to send in a letter about their little sister. But Kaila and Kiana had bigger ideas.
"We didn't want to just send in two or three letters from the family," Kiana said.
So, the two of them approached their principal at Lancaster School to see if they could ask fellow students to write letters. The school went above and beyond, Tricia Roy said, bringing in guidance counselors to talk to each class about albinism and then letting students write letters to the company during lunch. Kalli went to the school that day to answer questions from students.
"We had over 40 letters from the school and staff," Kiana said.
Tricia Roy also posted the girl's mission on Facebook and message boards for people with albinism, their families and friends. She has received letters from people nationwide and even outside the country.
"Everyone stares at Kalli and if we make an American Girl doll, it'll help them answer the questions that they're too afraid to ask because they think they're too personal," Kiana said.
But the doll could help people understand that Kalli is, with some slight help, able to live like any other 4-year-old. She uses a walking stick, and has to wear sunblock and sunglasses whenever she's outside.
But she goes to the beach with the help of a full-body bathing suit and a sun hat, and can run throughout her own home because she's memorized where everything is.
"She's smart as a whip and runs through life like any 4-year-old," Tricia Roy said.
She dances and is learning gymnastics from Kiana. She also is learning to play the piano.
"She played "Jingle Bells" in the Christmas recital," Roy said.
Just seconds later, Kalli was gone in a bright blur and "Jingle Bells" was coming from the piano a few rooms over. That's the Kalli her sisters want people to know — a girl who can do just about anything and is fun to be around, rather than some of the preconceived notions about albinism.
"All the movies that have a person with albinism, they show them being evil," Kaila said.
And for Kalli, who uses the term "sunglass kid" rather than albino to describe herself, the idea of having a doll like her is a pretty great one.
As her mother asked what a Kalli Frances doll would come with, Kalli ticked off some of her own accessories: a bright yellow dress, sunglasses, a walking stick, "a bathing suit like mine and beach socks."
Father Dave said his daughters are like second mothers.
"What's really nice is they include her in everything," he said.
And their mother has already told the girls it isn't about the end result. Even if the doll never gets made, they've already raised awareness in their school and in their community, among the people Kalli will know as she grows up.
That will help make Kalli's interactions with people easier, Tricia Roy said, even if it doesn't completely cure ignorance as they've hoped.
"What they're asking for from the world, I don't know if it'll ever really happen," Tricia Roy said. "But just knowing they think it's possible is enough for me."
Letters in support of the doll can be e-mailed to vote4kalli@gmail.com.
January 5, 2011
Salem sisters work to 'cure ignorance'
By Jillian Jorgensen
jjorgensen@eagletribune.com The Eagle Tribune Wed Jan 05, 2011, 12:16 AM EST
SALEM — Kalli Roy's two older sisters have American Girl dolls customized to look just like them. But getting one for Kalli is more difficult than picking out the right facial details from the doll catalog.
Kalli, 4, has albinism, an inherited genetic condition that means she has little or no pigment in her eyes, skin or hair. Her eyes appear violet and her vision is impaired, but that didn't stop her from sprinting around her house one recent evening.
Her sisters, Kaila, 10, and Kiana, 8, got the idea to ask the American Girl company to make a doll that looks like their sister. But their request isn't just so their sister could have a familiar toy.
They want "to cure ignorance," Kaila said.
The dolls come with books telling the tales of pre-teens from various points in history through the modern day. The girls hope a "Kalli Frances" doll and book would educate those who sometimes stare at Kalli or make mean comments.
At a summer camp, Kiana and Kaila were playing with a boy they had just met. They asked if he wanted to play with their sister, too.
"He said, 'No, she's a freak. She doesn't look like us. We can't play with her,'" Kiana said.
"Did I cry?" Kalli asked, from the other side of the table.
Kiana told Kalli she didn't cry, because she hadn't heard the exchange.
"What do you say when people stare at you or say bad things?" the girls' mother, Tricia, asked Kalli.
"I'm fabulous," Kalli replied.
The girls decided to contact American Girl on their own, Tricia Roy said, and the company urged them to send in a letter about their little sister. But Kaila and Kiana had bigger ideas.
"We didn't want to just send in two or three letters from the family," Kiana said.
So, the two of them approached their principal at Lancaster School to see if they could ask fellow students to write letters. The school went above and beyond, Tricia Roy said, bringing in guidance counselors to talk to each class about albinism and then letting students write letters to the company during lunch. Kalli went to the school that day to answer questions from students.
"We had over 40 letters from the school and staff," Kiana said.
Tricia Roy also posted the girl's mission on Facebook and message boards for people with albinism, their families and friends. She has received letters from people nationwide and even outside the country.
"Everyone stares at Kalli and if we make an American Girl doll, it'll help them answer the questions that they're too afraid to ask because they think they're too personal," Kiana said.
But the doll could help people understand that Kalli is, with some slight help, able to live like any other 4-year-old. She uses a walking stick, and has to wear sunblock and sunglasses whenever she's outside.
But she goes to the beach with the help of a full-body bathing suit and a sun hat, and can run throughout her own home because she's memorized where everything is.
"She's smart as a whip and runs through life like any 4-year-old," Tricia Roy said.
She dances and is learning gymnastics from Kiana. She also is learning to play the piano.
"She played "Jingle Bells" in the Christmas recital," Roy said.
Just seconds later, Kalli was gone in a bright blur and "Jingle Bells" was coming from the piano a few rooms over. That's the Kalli her sisters want people to know — a girl who can do just about anything and is fun to be around, rather than some of the preconceived notions about albinism.
"All the movies that have a person with albinism, they show them being evil," Kaila said.
And for Kalli, who uses the term "sunglass kid" rather than albino to describe herself, the idea of having a doll like her is a pretty great one.
As her mother asked what a Kalli Frances doll would come with, Kalli ticked off some of her own accessories: a bright yellow dress, sunglasses, a walking stick, "a bathing suit like mine and beach socks."
Father Dave said his daughters are like second mothers.
"What's really nice is they include her in everything," he said.
And their mother has already told the girls it isn't about the end result. Even if the doll never gets made, they've already raised awareness in their school and in their community, among the people Kalli will know as she grows up.
That will help make Kalli's interactions with people easier, Tricia Roy said, even if it doesn't completely cure ignorance as they've hoped.
"What they're asking for from the world, I don't know if it'll ever really happen," Tricia Roy said. "But just knowing they think it's possible is enough for me."
Letters in support of the doll can be e-mailed to vote4kalli@gmail.com.
Saturday, January 1, 2011
Happy 2011
Had a fun day in Boston seeing the melting ice sculptures, walking and having lunch!
A few goals for 2011:
Updating my blog more reguarly. : )
Joining the gym at Frankie's school and going at least 4 times a week!
Walking outside on good weather days.
Eating healthy!!
Figuring out a part time job for next fall
Finding happiness in each day, even when it is hard!
A few goals for 2011:
Updating my blog more reguarly. : )
Joining the gym at Frankie's school and going at least 4 times a week!
Walking outside on good weather days.
Eating healthy!!
Figuring out a part time job for next fall
Finding happiness in each day, even when it is hard!
Friday, December 31, 2010
Happy New Year!!
2010 was another hard year, with my Aunt Fran passing away. I miss her and Grandma each day.
I also have been having a hard health year, now with the blood clot and coumadin added on. But I wanted to think back for the fun, happy things over the year:
John and I celebrating our 10 year anniversary in St. John's!!!
Our 4th of July family weekend in Falmouth!
Lizzy making her First Communion!
Frankie turning 4 and starting the older kid classroom at school!
Lizzy turning 9 and celebrating at American Girl!
Lizzy starting the 3rd grade and joining the synchronized skating team!
Frankie starting ice skating lessons!
John starting a new job!
Earning some rewards for my Discovery Toys selling!
I also have been having a hard health year, now with the blood clot and coumadin added on. But I wanted to think back for the fun, happy things over the year:
John and I celebrating our 10 year anniversary in St. John's!!!
Our 4th of July family weekend in Falmouth!
Lizzy making her First Communion!
Frankie turning 4 and starting the older kid classroom at school!
Lizzy turning 9 and celebrating at American Girl!
Lizzy starting the 3rd grade and joining the synchronized skating team!
Frankie starting ice skating lessons!
John starting a new job!
Earning some rewards for my Discovery Toys selling!
Fun Christmas Activities!!
As promised, I wanted to mention all the fun activites we did this past month for Christmas!!
John and the kids went to The Boston Pops concert, (I was laid up that weekend). My friend, Anna was singing with the Pops, and they loved the concert, Santa and the Grinch song. Frankie could see santa from the balcony too. : )
The same weekend, they also went to the alumni BC Winter Wonderland, complete with Santa, gingerbread house making and a horse drawn carriage ride!
The night before Christmas Eve we did the Enchanted Village at Jordan's Furniture! The kids loved all the old time village scenes, complete with authentic smells! With yummy blueberry muffins after. : )
The Millis Wonderland is also a favorite! We went with our friends on a friday night, and drove through the grounds that are lit up with many different diplays, trains, scenes, etc. They take donations to benefit the Salvation Army too!
We made our annual trip to Plaster Fun Time to decorate Christmas ornaments one Saturday night! A great time to go because it is not crowded, at all! The kids take their time and made great keepsake ornaments to put on the tree each year.
Tonight we had the kids' cousins and aunts and uncles over for munchies and then watched the 7:00 Westwood fireworks. Very fun in the snow too!
We hope to go to donwtown Boston tomorrow to see the ice sculptures, and maybe the Stone Zoo Zoolights tomorrow night!
Happy new year! Here's hoping for a great 2011!!
John and the kids went to The Boston Pops concert, (I was laid up that weekend). My friend, Anna was singing with the Pops, and they loved the concert, Santa and the Grinch song. Frankie could see santa from the balcony too. : )
The same weekend, they also went to the alumni BC Winter Wonderland, complete with Santa, gingerbread house making and a horse drawn carriage ride!
The night before Christmas Eve we did the Enchanted Village at Jordan's Furniture! The kids loved all the old time village scenes, complete with authentic smells! With yummy blueberry muffins after. : )
The Millis Wonderland is also a favorite! We went with our friends on a friday night, and drove through the grounds that are lit up with many different diplays, trains, scenes, etc. They take donations to benefit the Salvation Army too!
We made our annual trip to Plaster Fun Time to decorate Christmas ornaments one Saturday night! A great time to go because it is not crowded, at all! The kids take their time and made great keepsake ornaments to put on the tree each year.
Tonight we had the kids' cousins and aunts and uncles over for munchies and then watched the 7:00 Westwood fireworks. Very fun in the snow too!
We hope to go to donwtown Boston tomorrow to see the ice sculptures, and maybe the Stone Zoo Zoolights tomorrow night!
Happy new year! Here's hoping for a great 2011!!
Indefinitely
Indefinitely sounds so long, doesn't it??
The doctor last week told me I have to stay on coumadin indefinetely! It just sounds so long, maybe the rest of my life. And wear the miserable compression stockings that long too! Now, I know there are worse things and people will say, "It could be worse", "think of all the people with worse things", yet I am having a hard time adjusting to this!!
The coumadin is a pain because of all the blood checks, twice a week for now. Risks associated with bleeding too much, etc. They even said not to ride my bike! And the stockings are uncomfortable and I'm dreading wearing them this summer already!
Just have had so many health issues and this one has just thrown me for a loop! Can't seem to shake it, I know I need to focus on positive, but it's just not working well right now!
Here's hoping for a better 2011.
The doctor last week told me I have to stay on coumadin indefinetely! It just sounds so long, maybe the rest of my life. And wear the miserable compression stockings that long too! Now, I know there are worse things and people will say, "It could be worse", "think of all the people with worse things", yet I am having a hard time adjusting to this!!
The coumadin is a pain because of all the blood checks, twice a week for now. Risks associated with bleeding too much, etc. They even said not to ride my bike! And the stockings are uncomfortable and I'm dreading wearing them this summer already!
Just have had so many health issues and this one has just thrown me for a loop! Can't seem to shake it, I know I need to focus on positive, but it's just not working well right now!
Here's hoping for a better 2011.
Wednesday, December 29, 2010
Merry Christmas!!
Merry Christmas, just a little late. : ) We had a nice one, celebrating with John's family on Christmas Eve and my parents on Christmas Day! Lizzy sang at Christmas Eve Mass, what a joy to hear them sing! She also was in the Christmas pageant the week before, playing Elizabeth and an angel. : ) I cried!
The kids enjoyed the big snow storm that followed Christmas!
We have done many fun pre-Christmas activites that I will post details about soon!
Christmas thankfulness:
Lizzy singing at Mass and being in the pageant.
Christmas eve and all the cousins playing together.
Frankie still believing in Santa; cookies and stockings on Christmas Eve.
Christmas morning!
The story of Christmas from Luke.
Ghee and Pa arriving and staying till today!
Playing in the snow.
Ice skating outside.
A warm fire.
A week off from school!
Baking : )
The kids enjoyed the big snow storm that followed Christmas!
We have done many fun pre-Christmas activites that I will post details about soon!
Christmas thankfulness:
Lizzy singing at Mass and being in the pageant.
Christmas eve and all the cousins playing together.
Frankie still believing in Santa; cookies and stockings on Christmas Eve.
Christmas morning!
The story of Christmas from Luke.
Ghee and Pa arriving and staying till today!
Playing in the snow.
Ice skating outside.
A warm fire.
A week off from school!
Baking : )
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