Parenting, Albinism and Boston Kids' Activities

Why Do IEP Meetings Make Me so On Edge?

2012-01-19T19:19:00.003-05:00

Today was Frankie's 3 year re-evaluation to see if he qualifies for services. Wow, did those 3 years fly, it seems like just yesterday he was 2 1/2 and we were having his first meeting. How far he has come!

All of his teachers and specialists were glowing about him; academically and his happy, laid back personality. He needs more work on asserting himself to play with other kids and approach them. He does learn primarily through his vision, and needs to learn to use it even more. So he still qualifies for O&M, vision services and OT. He does not need the school psychologist working with him anymore or the special education teacher. They were all amazed about the progress he has made, and I can see it too! It makes me happy and proud!

Part of me still just has a hard time with these meetings, though. It is emotionally draining and it gets me thinking about the future and issues he may have. I know I need to focus on the present and I will feel better, but I do feel nervous for a few days, even after these meetings. Do other sped. parents feel this way??

Great story, though, we were discussing the Carroll Kids summer program at the Carroll Center for the Blind in Newton, and the school has to find out more to see if he qualifies for services there. Frankie's TVI said if he does not qualify, she would go to the Westwood Lions meeting to see if we could get some assistance, as the camp is quite expensive. Tonight, I get a call from someone who is a member of the Westwood Lions Club! I was so shocked when he called! So I gave a donation and he gave me the information of the person to contact about meetings and assistance. I am still smiling how it all worked!

So, all in all, a good day!

Goodbye 2011, Hello 2012!!

2011-12-31T13:11:00.002-05:00

Last year I wrote down my goals for the year:
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!

I will continue to blog more, exercise and eat healthy. I have a part time substitute teaching job, and I am still exploring possibilities for a more permanent position.

I have been better at finding happiness in each day, lately! I truly enjoy spending as much time as I can with my family. I have really loved spending time with my kids off from school and doing fun activities and just hanging out at home playing games and baking!

So my goals for 2012:
Exercise, eat healthy and reach a healthy weight!
Continue to find a part time job.
Think of myself less, and others more!
Help other people who are less fortunate.
Be patient, kind and forgiving!

Happy Thanksgiving!

2011-11-27T18:35:00.002-05:00

I am most thankful for:

My precious family; John, Lizzy and Frankie! They bring me joy everyday and it is an honor to be a mom.

My parents for helping me become the person I am today and for all they still do.

John's family for becoming my 2nd family.

All of my friends, who have become like my family!

My 3 God daughters; Jessica, Michelle and Carly.

My new job, I love to teach children.

Thank you to God!

Off to Kindergarten!

2011-09-07T20:40:00.000-04:00

Wow, that was hard for me to send Frankie off to Kindergarten, on the bus! I didn't cry, as I thought I would, but the tears are forming as I write this! The last child going to "big kid", full day school is tough, and I will miss him and Lizzy.

The past few years have been rough for our family, but I have learned that time is precious and to enjoy each moment with my children!

So a few back-to-school bits of advice. : )

Spend some time really enjoying your children each day; playing games, reading, walking, biking, to name a few.

Really listen to them and what they have to say about their day.

Enjoy the moment, try not to worry about the dishes, bills, laundry; at least for a little while.

Try to schedule in "fun time", that isn't rushing to a sport, activity and where you can just "hang out" with your kids.

Remember that the time does go by so fast and they will only be this particular age for a short time, enjoy it!!

Park-a-Palooza

2011-09-05T20:59:00.003-04:00

I read this idea of a "park-a-palooza" in a magazine last summer and loved it! It entails mapping out playgrounds, in the same general area, and then "playground hopping" all day!!

Last year we mapped out playgrounds in Brookline, and played at 7 or 8 of them. We went with the kids' cousins, and fun was had by all. It was a cooler day, so we did not do any of the sprinkler parks, but played on the structures, rolled down a big hill and walked through a rose garden. We had a picnic lunch and enjoyed playgrounds in the beautiful weather of Labor Day weekend!

This year, we choose Labor Day weekend again for park-a-palooza and went to Cambridge! It was a much warmer day, so the kids wore their bathing suits and had fun at many of the sprinkler parks! We again visited about 7 parks, had a picnic and enjoyed many unusual pieces of equipment. One of the playgrounds had a huge climbing structure with a tunnel slide coming down. Another had a seesaw that was quite tall and had weights to balance the 2 people. : )

My sister-in-law has started a website with ratings on playgrounds, pictures, etc! www.playgroundpalooza.com

The Beauty of the Vioiln

2011-06-02T18:32:00.001-04:00

The bow gliding over the violin, producing a melodious sound, reminds me of my childhood. My grandfather, "Pa", played the violin since he was a boy, and I remember hearing him play when I was young. It was always so mesmerising and brought me a feeling of contentment. He didn't bring it out too often, so it was a special treat.

Friday, Elizabeth had her violin recital at the Westwood High School, where she and the other students each played a solo. She played "Bingo", and did very well. All the children were impressive in their skills, some playing a solo for the first time. Others songs included, "Twinkle, Twinkle Little Star", "Michael, Row the Boat Ashore" and "Snake Charmer". The finale, which included all the students, was "Frere Jacques". I was impressed, as always, with how well each student does, and how much hard work takes place to prepare.

Elizabeth's violin teacher puts in a lot of hard work all year, as well. I could see her routing for each student and willing them to hit each note! After the recital, everyone brought snacks and enjoyed the food and the good company!

As I was sitting listening to all these young students play, I was taken back to my childhood and thought of Pa playing his violin all those years ago. Since he has passed away, it is comforting to have Elizabeth playing to remind me of those wonderful memories.

If you get a chance to see a Westwood musical performance, please do. I have been impressed with all the concerts I have attended. There will be an "All Strings" concert on Wednesday, June 1st at 7 p.m. at Westwood High School.

Westwood PMC Kids Ride!!

2011-05-15T16:39:00.001-04:00

Wow, what a great morning! The rain held off for the 4th annual Westwood PMC kids ride! Over 500 kids came to ride and raised over $48,000 for the Dana Farber and Jimmy Fund clinic for cancer patients and research!! This is such a great accomplishment for these kids!

My children, Elizabeth, 9 and Frankie, 5 rode their bikes today! Elizabeth did the 6 mile ride and Frankie did the 1 mile, with the second lap all on his own. : ) They collectively raised $500.

From the moment the Star Spangled Banner is played, I start to get choked up by how much everyone cares! It is amazing to see so many people come together for a common cause to help other people; and hopefully soon, we will live in a world without cancer. My aunt passed away from a brain tumor a year ago, and I think of her every day. The kids wanted to ride in her momory, as well as riding in honor of Mrs. Moody, Martha Jones School librarian.

Elizabeth said the bike ride was fun, the popsicles were good too. : ) She was impressed that there were so many people, and raising over $48,000 made her happy. She thought it was extra special that the kids were riding for Mrs. Moody, too.

Frankie also said the ride was good and had a lot of people. He liked riding his bike and seeing the kids on the obstacles course as he came back!

Now that the rain is pouring down, I am happy so many people were able to ride this morning and get that much closer to a cure!! Thank you to all!!

New Westwood Patch post!!

2011-05-12T16:12:00.000-04:00

I have started blogging on Westwood Patch,

http://westwood.patch.com/blog_posts/kindergarten-orientation
This is my first post there, just a bit revised from my Kindergarten post on here!

Let me know what you think!

Kindergarten Orientation

2011-05-08T20:23:00.001-04:00

On Friday, Frankie and I went to Kindergarten orientation! I remember going 4 years ago with Lizzy, with Frankie in tow in his stroller, throwing Cheerios on the floor. : ) Really does not seem that long ago!!

He was excited to go and lined up with the other kids to walk to the classroom, while the parents went to the library. He looked so small to me, still my baby. : ) But he went right along happily. When we did go to the classrooms, he was happily playing with 2 other boys in teh block area. He was talking to them and the teacher, initiating play with them. Makes me so happy, he has come so far socially!

We then got a tour of the school; library, other K classroom, lunchroom, gym, etc. Finally we got to go on the bus and look around. He had been on the day before with his O&M teacher, so he showed me where he would sit, and the emergency exit.

Great visit, but I know I will be sad to see him go off to school, come September!

Frankie is 5!!!

2011-05-05T14:39:00.003-04:00

Happy birthday to my sweet boy!! I cannot believe it was 5 years ago yesterday that he was born! We enjoyed the day by opening his gifts, early, and then going to Toys R Us for a special birthday balloon and crown, and picking another toy! He also got his own library card, now that he is a big kid!

He asked for a special meal of turkey burgers and helped me make and decorate cupcakes with soccer balls!

Tomorrow is Kindergarten orientaion for my big boy, so it is quite a week! He is growing up, but he still likes to come sit on my lap! : )

Washington DC for kids!

2011-05-05T14:27:00.002-04:00

Our family recently took a trip to Washington, DC, what fun!! We broke up the trip both ways, which helped us all with the long ride! On the way down, we stayed overnight with friends in central Jersey. Then we all headed out the next day, our first stop in Philly to see the Liberty Bell. We then had a quick stop in Delaware and lunch in Baltimore at the Inner Harbor. We really enjoyed walking around there and touring the ships and submarine. : )

Once in DC, we did a lot of walking to see many places in 3 days! Since Frankie was still 4, we brought the umbrella stroller and he used it, a lot! The kids loved the Smithsonian museums, especially the Air and Space, American history and Natural history. We also did the Native American museum and a few art museums.

We had a tour of the capitol, which we arranged ahead of time through our senator. We were a bit late in requesting the White House tour, so we could only look at it from afar. We also toured the supreme court, and saw the various monuments; Lincoln, Washington, Jefferson, Vietnam, etc.

We took the Metro 2 mornings; once to the Arlington National Cemetery and once to the National Shrine. Arlington is just so humbling, seeing how many people have given their lives for our freedom today. We saw Kennedy's grave and the eternal flame. I have a great picture of Frankie with his camera taking a picture of Robert Kennedy's grave, brings tears to my eyes. The National Shrine was also so moving and just amazing to see and walk through. We just toured around on our own and it was beautiful.

All in all a great family vacation! The weather in April was beautiful too!

NOAH Bowl-a-thon 2011

2011-02-28T09:04:00.002-05:00

We had our annual bowl-a-thon yesterday to benefit NOAH and people with albinism, like Frankie! We had 45 people come to Ryan Family Amusements in Millis, MA! Five people total; 4 children including Frankie and 1 adult with albinism came.

Everyone had a fun time bowling, playing arcade games and eating pizza and cookies! As always, it is always nice to talk with others who have albinism or have children with albinism. The camaraderie of friends and family bowling together for a common cause is a great feeling!

School Vacation week events!

2011-02-25T16:10:00.002-05:00

So I am still sad and not feeling great, trying to see many doctors in the next few weeks; but the kids were off from school and I wanted to have fun with them and make sure they had an enjoyable week!

The weekend started out with Coco Key Water Resort in Danvers. The kids loved the lazy river, waterslides, and pools!! We stayed over and got to swim and play for 2 days!

On Monday we went snow shoeing at Gore Place in Waltham! We had never tried it before and it was so much fun! Lizzy and Frankie both enjoyed it, we walked for about 45 minutes and then came in for hot cocoa!

Sky Zone! trampoline park in Hyde Park was also quite fun for the kids! They jumped for 1/2 hour in the hugs trampoline and they could even jump off the wall!

We love skating at Larz Anderson park in Brookline, and again did it this week! We love skating outside!

Then we had our annual bowl-a-thon, post to follow later!

Sad

2011-02-20T18:42:00.003-05:00

I got to go down to NJ with John for Pa's wake and funeral. It was comforting to see the family, especially my mom.
Pa was in the air force, so he had a military funeral and 2 air force men were there and folded the flag and presented it to my mom. One then played Taps. It was very moving.
I am feeling especially sad that Grandma and Pa are now both gone. I know they are in a better place and I will see them again some day. But it is still very sad. Just so many family members dying not so far apart is taking it's toll. Coupled with my health issues, it has been a lot. The kids are off of school this week, so I want to make it a fun week for them, so I will try my best. But I really just feel sad.

Miss you, Pa!

2011-02-14T18:25:00.002-05:00

My grandpa died on Sunday morning, at his house, in his own bed. He had been in hospice, but he had just came home on Wednesday, and was so happy to be home. I am glad he got to be at home and now is "home" with Grandma. I miss them both so much.

Pa was always dressing up in funny get-ups to make us all laugh. I remember him dressing up in bicycle shorts, and us all laughing at his skinny legs. : ) Or himdoing funny dances with us, playing his harmonica. He also was a great violin player and I loved to hear him play that. We are going to use Lizzy toy violin in his casket, she was happy to give it.

I feel blessed that I had so many years to spend with Pa and Grandma; and they were such a big part of my life and got to know my kids! I will miss them always, I do have so many happy memories!

Thankful Thursday!

2011-02-10T19:09:00.003-05:00

I bought a journal today to write my thankful thoughts each day. I will share once in a while. : )

Colette coming to play with Frankie!
Lizzy really enjoying her skating!
Talking with Mom. : )
Warm peaches with cinnamon.
Getting special Valentine's gifts for the kids, God-daughters, neices and nephews.

Transition to Kindergarten!!

2011-02-04T16:29:00.002-05:00

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!

Thankful Thursday!

2011-02-03T21:24:00.002-05:00

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.

My blog featured on Specialchildren.about.com!!

2011-01-08T21:14:00.004-05:00

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.

What I Like about Winter

2011-01-05T20:16:00.002-05:00

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

Send a Letter to American Girl!!

2011-01-05T18:01:00.002-05:00

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.

Happy 2011

2011-01-01T21:48:00.002-05:00

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!

Happy New Year!!

2010-12-31T21:03:00.002-05:00

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!

Fun Christmas Activities!!

2010-12-31T20:49:00.002-05:00

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!!

Indefinitely

2010-12-31T14:14:00.002-05:00

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.

Merry Christmas!!

2010-12-29T22:16:00.002-05:00

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 : )

Blood Clot - Yuck

2010-12-15T16:39:00.002-05:00

Last week I got a blood clot in my right calf. I had one right after Lizzy was born so I knew the signs and I went in early. They did the ultrasound to confirm. Frankie was with me, but he loved seeing the pictures of my leg on the computer and was asking that they turn it so he could see. : )

So I am on coumadin and lovanox shots, ouch! Every morning and every evening another shot in the leg, I alternate. I just can't do it in the tummy, even though I did when I was pregnant with Frankie. I did one in the tummy this time and have a green, blue, purple yellow bruise the size of a walnut; have a hard time looking at it!

So I am slowly recovering, just amazed how everything hurts!! And I am so tired and out of it! Just making dinner is an effort and I need to sit down in between each step of preparing it! I sleep and sleep and wake up exausted and aching! But at least I caught it early and I am at home, not in the hospital! Oh and I can't remember anything!

Eventually things will get easier. And making dinner will even be easy again. I guess for now it is make easy meals and rest as much as I can.

But I am going to make a happy list: (My mom said she started this yesterday)

- A good brownie meeting with Lizzy's troop
- Going to see the sheep at the church down the street in the pretty snow
- A warm house and hearing my heat come on
- Lizzy getting to be Elizabeth and an angel in the church Christmas Pageant
- Frankie loving his ice skating lessons

Happy Thanksgiving!!

2010-11-29T19:53:00.002-05:00

This was in our church bulletin last week!

I am thankful for the mess to clean up after a party because it means I have been surrounded by friends.
I am thankful for all of the running around and “dropping off” at school, sports, dance, and friends because it means I have my wonderful kids.
I am thankful for the clothes that fit a little too snug because it means I have had enough to eat.
I am thankful for my shadow that watches me work because it means I am out in the sunshine.
I am thankful for a lawn that needs mowing, windows that need cleaning, gutters that need fixing because it means I have a home.
I am thankful for all the complaining I do about the government because it means we have freedom of speech.
I am thankful for the spot I find at the far end of the parking lot because it means I am capable of walking.
I am thankful for the big heating bill because it means I am warm.
I am thankful for the piles of laundry and ironing because it means my loved-ones are nearby.
I am thankful for weariness and aching muscles at the end of the day because it means I have
been productive.
I am thankful for the alarm that goes off early in the morning because it means I am alive.

Take time to appreciate whats around you!

Edaville Festival of Lights!!

2010-11-22T15:07:00.000-05:00

We went to the Edaville Festival of Lights this weekend, very fun time had by all!! Since it was the second weekend open in November is wasn't too crowded. We waited for a few minutes for the train ride and it was spectacular! The train was warm, a little too warm for me, (but I tend to overheat easily) and away we went. There were lights everywhere and all kinds of lit up houses, characters and animals. There were some really cool ones that the light moved so it looked like the bear was throwing a basket or the frog was jumping in thr pond. Frankie is at the age where is was all so magical to him and he was SOOO excited.
After the train we did some rides; rocket ship, tilt-a-whirl, carousel, caterpillar, and went in the trains. The line for the ferris wheel was long and since it takes a while to load, we decided to skip that. But the wait for everything else was fine. We enjoyed just walking and seeing all the lights, when we first pulled up there were more than we imagined!
We ended the night with the snacks and hot cocoa. : ) YUM!!
It may be the last Christmas season for Edavilee, I am really happy we made it this year!

New Family Touched by Albinism

2010-11-14T20:02:00.002-05:00

We had lunch today with a family with a little girl with albinism. Cute little Hannah is 14 months and has albinism, and we got to meet her and her mom, dad and grandma today! What a fun lunch and such a nice family! Hannah was diagnosed early on, at 5 days I believe. She goes to the same doctors' office as Frankie. And she loves elephants like Lizzy. : )

It was great to finally meet them, as we have been trying to find a good date for months. I can remember back to when Frankie was 1 and still having a lot of questions and anxieties. So it is nice to be able to answer some questions for others!

I was also thinking about how all the families I have met or talked to with albinism have been so kind, friendly and great people to be around!!

I always look forward to out bowl-a-thon in February to get everyone together and love to add new families who will come!!

New Blog

2010-11-13T21:02:00.002-05:00

I am helping with Frankie's preschool blog!

It is just up and running, but hopefully a great resource to other preschool parents and parents with special needs children in general!

Skating!

2010-11-13T20:54:00.003-05:00

Frankie took his first skating lesson this past week and can't wait to go back! He askes me every day if it is skating lesson day again! He learned to skate when he was 2 1/2, but this was his first formal lesson, and he did great! He recently learned to get back up from the ice when he falls, and he was doing that great too. Most of the other kids hadn't been skating, so he was doing more than them and felt proud of himself.

He keeps mentioning wanting to play hockey, which scares me a bit. Seems hard to see that small puck?? Although it is quite a contrast on the ice. We will see. : )

For now he just loves to skate, and be like Lizzy too. I asked him his favorite part and he said, "the whole thing"!

Happy Birthday Grandma!!

2010-11-08T08:35:00.002-05:00

I still miss you every day! But I know that you are peaceful in heaven again this year. Watch over us. We love you!!

Lizzy's Synchro!

2010-11-07T16:00:00.002-05:00

Lizzy had her first synchronized skating competition yesterday!! Her team came in 4th place and got medals too, they were very happy for their first competition of the season!
I was impressed with their speed and difficulty of some of the maneuvers. I think they will only get better with time. I could see Lizzy doing very well as part of the team with her strong stroking and attention to detail, as far as foot position, edges, etc. Great Job!

Fun with the CCTV

2010-11-04T21:52:00.003-04:00

Today Frankie and I met with his TVI, from the Carroll Center, at the library to use the CCTV there. He had used one at the Perkins low vision clinic once and one other time at a friend's house, but just for a bit. The one at the library today was old, and black and white. I was surprised, but it did the job.

Frankie picked out a Curious George book (that we had not read yet!) and we put it under the magnifier and read the words and discussed the pictures. Frankie's TVI asked him what he thought about black writing on white or vice versa. He said white on black, which has so much less glare! I could see the white words on black better myself. She was asking him about the pictures and he enjoyed it and liked to move the book around. He also liked experimenting with the buttons. : ) At one point he was looking at a helicopter on the CCTV screen, when she took the book out and asked him where the helicopter was, he said he didn't see it.

I felt like it was great for him to get more exposure with various technologies. His TVI said we will continue to experiment and expose him to technologies until we find something that works best for him and will aid him in elementary school. So I feel like it was a good start and he is on his way! We also enjoyed exploring a new library!

Any Regular Readers??

2010-11-03T21:30:00.002-04:00

I am finally updating again! I know it has been a while, but are there any regular readers out there?? I put a link to my blog on Facebook and have it on my email, but wasn't sure about posting each post to Facebook?

So just curious, who stops by to read?!

My Favorite Discovery Toys

2010-11-03T15:19:00.004-04:00

I have sold Discovery Toys for 8 years now!! I thought I would take a few minutes to review a few of my (and my kids') favorites.

Infant: Super Yummy Teether

Frankie had this one when he was a baby and I love the vanilla smell. "Imagine five teethers in one that encourage sensory exploration while soothing and comforting your teething tot. A light vanilla scent stimulates sense of smell."

Toddler: Castle Marbleworks

This has been around for a while, Lizzy loved it and Frankie too! Children can put together the castle and then roll the balls down to the bottom. It is always a hit in my house with kids of all ages! "Your child will have fun dropping the 3 weighted chime balls down the track of this marble run building system! As balls race, spin and zig-zag, your little one learns to predict the balls’ course."

Preschool: Busy Farm

I had a hard time deciding, but picked Busy Farm. The kids love sorting, counting, matching and just playing with the farm animals. "Moo! Quack! Oink! Greet the Busy Farm friends: 36 colorful soft-molded animals ready to play language-based, reading readiness activities involving colors, sorting, matching, counting, and alphabet awareness. Set includes 12 double-sided Activity Cards."

School Years: Wiz Kidz

We have had this one for a number of years and Lizzy loves it. Frankie has been starting to play now that he is learning letters too. "This family game for all ages reinforces vocabulary, phonics, and word categorizations in record speed. Players pick a card from the alphabet letter stack and a card from the answer stack. Then it's time to think fast to generate as many logical associations as possible."

Joy of learning sets combine favorites from each category into a discounted bundle!

Some great toy ideas for the holidays!

2 Slow Days, Kind of Nice!

2010-11-03T14:55:00.002-04:00

Lizzy has been sick with a stomach bug since Monday night, she was sick mostly that night and has been recovering yesterday and today. I hate to see my kids sick, and luckily she is quite healthy! So I felt bad that she was sick, but the slowing down for 2 days was quite nice! Today she was feeling better, (not quite well enough for school), so we have been decorating turkeys, playing games and watching a movie; instead of trying to be 7 different places throughout the day for both kids! I do enjoy the slower pace!

Sometimes I am torn between having the kids do all the activities they want, and just having time to relax, play, etc. We have tried to find that balance, but some days seem especially, busy, like short Wednesdays! So a day or so of staying in does feel nice. : ) I like time to just enjoy my kids and spend time with them. Next Thursday they have off fro Veterans' Day and I am looking forward to going out for the day with them, lunch, playground and a little shopping. : )

Happy Halloween . . .and November!

2010-11-02T17:37:00.002-04:00

We had a very busy, fun-filled halloween! There are so many parties, events now, you have to pick which ones to go to, there are just so many! Much more than when I was a kid. : )

Last week Frankie's class walked to the pumpkin patch to pick a pumpkin, listen to stories and have a picnic snack, beautiful day. On Thursday they used the pumpkins to decorate. The parents came in to help and the kids sang songs too! So funny to watch them trying to remember all the words and do hand motions.

Friday Frankie could wear his costume to school and Lizzy had black and orange day. Friday night was Lizzy's school party, complete with haunted hallway!

Saturday we carved our pumpkin, the kids did it all by themselves and made a whole person carving! Then we went to the Let's Motor party at night; games, goodies, fun!

Sunday we got to see all the cousins in costume at Nana's. : ) Then the boo at the Franklin Park zoo, complete with trick or treating, crafts and, of course, animals. We saw the lion up close!

We rested for a bit with pizza before heading out for 2 hours of trick or treating! I stayed home and gave out candy! I get tired just reading about it all! The kids had a ball, definitely a lot to do!

Now on to a great fun filled November, I'm sure!

Ward's Berry Farm

2010-10-25T18:02:00.002-04:00

We really enjoy going to Ward's Berry Farm!! We went yesterday for a hayride and pumpkin picking. The hayride is about 30 minutes round trip, and then we got to get off to pick pumpkins for a while. The kids loved browsing all the different sizes of pumpkins and gourds. We got one big pumpkin and many gourds. : )

There is a hay stack to climb, one of the biggest kid attractions, swings, slides and animals to pet and feed! My kids were so into the haystack we didn't even make it to the animals.

Always a fun day and we enjoy strawberries in June, blueberries in July, and pumpkins in the fall. Last spring we also went on a hayride in the spring and planted tomato plants!

Yard House - pretty kid friendly!

2010-10-23T21:19:00.002-04:00

We went with our good friends, Anna and Ben, to the Yard House tonight. John and I had a gone a few times before for special occasions and sat outside; nice view, weather, food, drinks! I hadn't really thought of it as kid friendly. So we went early tonight, and it was already crowded. We were seated right away, though, in a circular large booth, kids loved that. We got a few yummy appetizers to share. The kids menu was 12 pages of mazes, coloring, etc. and they usual kid fair meals. For drinks they could get a soda or lemonade with different flavors mixed in, there were many sides to choose from and a big fruit pop for dessert. It is also very noisy inside, so therefore very kid friendly too. So it was a fun evening and I was happy that it was as kid friendly as it was!

Lizzy sings in the Church Chorus

2010-10-23T21:14:00.002-04:00

Lizzy started rehearsing with our church's children's chorus last month, she loves it! She really enjoys singing. She sang at her first Mass last weekend! There were only 4 girls up there, she did great! It makes me so glad that she wants to sing in church and get up there and do it! She is full of spunk and is also so loving to others!

From Oceanspray.com . . .

2010-10-21T13:26:00.004-04:00

Frankie and I made these scones with all the cranberries we had from the Edaville cranberry festival. Came out pretty good!

CRANBERRY CORNBREAD SCONES
INGREDIENTS:

2 cups all-purpose flour
1/2 cup cornmeal
1/3 cup sugar
1 tablespoon baking powder
1/2 teaspoon salt
1/3 cup butter
2/3 cup milk
3/4 cup Ocean Spray® Craisins® Original Dried Cranberries (I used fresh cranberries)

DIRECTIONS:

Preheat oven to 400º F. Grease a large cookie sheet.

Combine flour, cornmeal, sugar, baking powder and salt in medium bowl and stir until mixed. Cut butter into flour mixture with a pastry blender until coarse crumbs form. Add milk and stir with fork just until a sticky dough forms. Gently stir dried cranberries into dough.

Turn the dough out onto a floured surface and knead gently about 10 times. Pat dough into a ½-inch thick circle. Cut out dough circles with 2 ½-inch biscuit cutter and place on cookie sheet.

Bake 14 to 18 minutes or until golden brown. Serve warm or at room temperature. Makes 10 scones.

Frankie Learns to Swim!!

2010-10-20T12:48:00.003-04:00

Frankie learned to swim yesterday!! He started level 1 swimming 5 weeks ago, yesterday was the last class and he swam on his own for about 10 feet. : ) He went from his teacher to the wall, and then pushed off the wall back to his teacher! I felt so proud and he has been telling everyone of his success!
He usually has one other child in his class, but yesterday was a private lesson. : ) I was just amazed how quickly he went from not swimming to being a swimmer!! Lessons start again in a few weeks!

Frankie's IEP

2010-10-19T11:10:00.002-04:00

Alright, i am going to be good about posting!

Frankie has his big IEP meeting every March, and we have had 2 follow ups since; the last one was last week! His classroom teacher and specialists had glowing things to say about him! He is doing so much better attending and listening in circle time, playing and interacting with his friends, starting to write his name and recognizing letters! I was so pleased, we have been working on letters a lot. I have tactile letters where he cantrace the letter with his finger and it feels like sand paper, he loves them!

So he continues to get once a week O&M and once every other week vision services. He is working on cane training, which may help him as he gets older.

The director at his preschool has started the transition to kindergarten process and has had meeting with the principal at the elementray school, I just cannot believe that he will be in K next year! He still seems like my baby, even though he will always tell you he is a big boy!

Thinking back to him when he was 4 months old and first diagnosed, it is hard to believe how far he has come! I love the fact that he is playing with his friends so much more and initiating play!! At 4 months, ireally didn't know that we would ever really see. He is such a blessing! Funny too. : )

Oh My Gosh!!

2010-10-18T08:49:00.002-04:00

I can't believe how long it has been since I blogged!! I REALLY want to start up again!

A few updates on our family:

Frankie is in his second year of preschool! He loves it and his IEP is pretty good too (more on that to follow).He will be transitioning to K for next fall! He is learning to swim, he plays tball, is starting basketball and skating!

Lizzy started 3rd grade! She loves her skating and is on the synchronized skating team this year, skating twice a week! She plays violin and sings in out church choir, yesterday was her first Mass singing!

John started a new job closed to home, which he enjoys a lot. I am co presidnt of Frankie's PTO, more to come. : )

So far 2010 has been a better year than 2009 was for us. Aunt Fran did pass away in April, so that has been sad for me every day still. I think of her and Grandma every day!

Things to be happy about today:
Beautiful day!
Going for a walk
Lizzy finds out about student council!
She passed basic 5 in skating over the weekend

NOAH Bowl-a-thon 2010

2010-02-21T19:15:00.003-05:00

We enjoyed our annual bowl-a-thon yesterday, with 65 people bowling together!! We had 5 children and 1 adult with albinism, some old friends and new ones! It was great to have so many people together for a common goal!!

It is great for me to get to talk to other people who have albinism and who's kids have albinism! They understand the sun issues, doctors appointments, school struggles, but most of all how much people with albinism can do!

Thanks to all who came out to bowl and donated to NOAH!

"I can't see the Patriots"

2010-01-14T22:32:00.003-05:00

We went to a high school basketball game this afternoon, that my brother-in-law coaches. Lizzy had a great time and loved watching and cheering, especially since she has started playing basketball this year.
Frankie, on the other hand was more interested in eating. About half way through, he said "I don't really like it because I can't see the Patriots". He watches the Patriots on TV with Daddy, and thinks every sport is them. It was a little funny, in this respect, yet I felt so sad that he truly could not see the players or game. Makes you realize his visual limitations. Just feeling a little sad tonight. But I'm sure he'll have me smiling again in the morning!

Let's Motor

2010-01-06T20:06:00.003-05:00

Frankie had his first class at Let's Motor yesterday, he loved it! He had a one on one class with the owner which started with stretching and yoga. He and Lizzy make up yoga moves, so he loved this. He then got to do an obstacle course and some tumbling, jumping and climbing. In the beginning he painted a fish for the new mural and the session ended with a lollipop!
Let's Motor specializes in kids' with special needs, and the director has had other kids with albinism. It was very nice to have some work with Frankie who really gets him. We are excited for next week!

Happy 2010!!

2010-01-05T21:09:00.003-05:00

Wow, it has been SO long!! 2009 was a HARD year, so I am looking forward to 2010 being better! With Frankie's surgery last year, his recovery, IEP stuff, Aunt Fran's brain tumor, and the passing of Grandma, is was a sad year. I pretty much forgot about blogging. But I am going to try very hard to get back into it this year!

Frankie loves his preschool! He is in the same school he started at the end of last year, with the same teachers! They are talking about pets now. They were supposed to bring in a stuffed pet to play in the classroom with; dog, cat, etc. Since he likes Curious George so much, mostly all of his animals are monkeys! : ) So he wound up bringing in a meerkat!

Lizzy loves school too! She is in second grade and skates, does ballet, plays the violin and basketball!

Albinism on 20/20

2009-10-02T21:03:00.002-04:00

Please watch in support of Frankie!!
20/20 Special: Overcoming Social Stigma of Albinism, Friday, October 2nd at 10pm

Visit http://abcnews.go.com/2020 for the latest information.

Frankie goes to School!

2009-05-11T20:20:00.003-04:00

Frankis is in his second week of preschool already!! He loves it and asks every day if he is going today. On his first day, he said he wanted to go back as soon as it was done. I am so glad he likes it!
I met his new TVI last week too, she seems very nice and was there again today.
We got to visit the classroom twice before he started, once with just his teacher and O and M specialist. He went another day when the kids where there for a hour, so that was great to get adjusted. John and I both stayed on his first day for about 1/2 hour.
This week they are talking about bugs. He came home with a bug stamped picture, talking about lady bugs! So it has been a great experience for him so far, and he talks about the other kids too.
Today the sun awning was also up over some of the equipment, so that will help him with the sun.
I am so glad he likes it so much!!

Grandma, I Miss You

2009-05-10T19:23:00.003-04:00

I was able to make it down to the wake and funeral for my Grandma. It was comforting to be with family and see so many relatives and friends who came. Of course it was comforting to be with my mom.
My grandma still looked so beautiful, she was wearing the pink dress she wore to my wedding, surrounded by pink flowers. The service for her was so beautiful too. My mom and I each did a Bible reading. A lady my mom knows sang, "It is Well with My Soul" and "I Can Only Imagine". I spoke a few words about my grandma too, just spur of the moment. I talked about how she was a rare person who was always kind and gentle. She was always having fun with us; camp outs, parties, etc. We were always laughing. My mom gave a wonderful tribute, a letter to her mom. She had read it to Grandma a few years ago and Grandma had said it was the nicest thing anyone had even said about her. The service closed with some kind words by the pastor.
I just wanted to write down a few of these memories so I can keep them close. It was cold and rainy at the cemetery, but as soon as the pastor started to speak, the church bells rang out! We then went out to eat and reminisced about stories of Grandma and Pa, pretty much all funny!
I really miss her a lot. I feel sad almost every night and cry. She was a wonderful person!

Happy 3rd Birthday, Frankie!! May 4, 2009

2009-05-10T19:13:00.002-04:00

Frankie is 3!! He turned 3 on Monday, so the 4 of us celebrated Sunday night before I left for NJ. Yesterday we had his party with family and friends in our backyard. The rain held off and everyone had fun! We played stick the hubcap on Lightning McQueen, a cars scavenger hunt, had pizza snacks and cake! Frankie's EI teachers were even able to come!! Yeah!
So my big boy is 3!!!

Grandma

2009-05-03T21:07:00.002-04:00

My Grandma passed away today, my mom's mom. It is such a shock, she was sitting on the bed talking to Pa and she fell off the bed and died. She had a massive heart attack.
I was very close to her and Pa. We were always at their house and have such fun memories. Every year on labor day weekend we would camp out in their backyard, have a BBQ, lots of candy and snacks, games, cards, and fun! The first year they both dressed up as ghosts to scare us. I was really scared at first, but then did realize it was them.
We were always doing something funny together too. When she got her video camera, we would make up plays, sing funny songs and have lawn chair precision team skits. She always had fun toys and candy and goodies. She would say, "Save room for dessert!" She stills has fun buying things for her 4 great grand children.
We got to see her and go out to lunch 2 weeks ago. I am so glad. She gave Frankie his birthday gifts and a coloring book and crayons for Lizzy. I am glad Lizzy is old enough to remember her.
I miss you already, Grandma. I love you so much!

Life

2009-05-02T20:23:00.002-04:00

Wow, it's been along time since I have posted, so much going on!! I have a lot of updates on TVI's, school, etc, I will write about soon.
Lizzy, Frankie and I headed down to NJ to visit my parents over spring break a few weeks ago. We got some bad news, my aunt was diagnosed with a stage 4 cancerous brain tumor. I have really been in shock the past 2 weeks and cannot even believe it. She was fine one day, and this news the next. It saddens me that she has this and it is so progressed. It is also sad for my family, she is my dad's younger sister. She will start chemo and radiation next week, we keep praying for her!
While she was having a biopsy last week, she said she could feel her dad (my grandpa) watching over her. He died year ago Valentine's Day.
That reminded me of what happened just before Frankie's surgery, and I have thought of ever since and wanted to share. Of course before his surgery, i I was quite nervous and upset. I went to mass by myself the Sunday before. I felt kind of a mess, and then 2 people sat down behind me and I smelled cologne and I immediately thought of him, it was the cologne he wore, and I was transported in my mind to their old house, in my dad's old room. It was a small room, just like Frankie's room. Then I was in my grandparents bedroom, and I knew that my grandpa was looking out for Frankie!
It helped me get through the next few weeks of the surgery and recovery.
I am praying every day for my aunt and trying to make the most of each day that I spend with my family. Life it good, but is is also short and sometimes difficult. Happy times should be cherished. You really never know what the future holds. So I am going to try every day to think of things that happened that made me smile, happy and write them down.
Frankie was sick today, but I can still think of a few:
Lizzy got to go to her little league parade, softball game and friend's house
Frankie had a yummy popsicle and jello
We all watched part of the Sound of Music together
It was a nice day and I got to take a walk.

Happy Easter!!

2009-04-12T21:49:00.002-04:00

We had a fun weekend! Yesterday we went to the Stone Zoo for the Bunny Bonanza! The kids got their pic with the bunny, planted seeds, did crafts and played games! We got to see some animals too, including the new back bears. It was cold, though, so we had lunch in the car!
This morning we started with an early morning egg hunt and opening Easter baskets, then went to church. Then the family came over for brunch and more egg hunting! Playground later in the day!

Circus of the Senses

2009-04-08T20:00:00.002-04:00

Frankie and I went to the Big Apple Circus, "Circus of the Senses" today, in Boston! We went with friends, the little girl has albinism, and met another family with a girl with albinism too!
The show itself was great, we were in the 2nd row, but I still don't think Frankie could see too well, he was more interested in climbing in and out of his chair! : ) There were clown acts, great trapeze and balance acts, dancing, dogs, etc!
Afterwards, we got to go up in the ring for the touch session! That was so great!
Frankie got to touch the dog and pony, swing on a rope trapeze, touch the
costumes, use the juggling pins, talk to the clowns! It was so much fun to meet the performers and see everything up close! He actually could see the people and animals and had fun talking to them!
We can't wait to go again next year!!

IEP Meeting!!!!!

2009-03-25T20:30:00.003-04:00

Yea, Frankie got into the integrated preschool in our town and we are happy with his IEP!! I am very excited and relieved.
He will receive an hour a week of vision services and 45 minutes a week of O and M. The specialists will also have time to consult with the teachers. His teacher seems so nice. We are going to go into the school in a few weeks with the O and M specialist, so he can get used to things.
We finally got the vision report late last night, so I think the director at the preschool is going to look into getting a new person. It doesn't seem like she can take this on, at this time.
Frankie will start school right on his birthday, May 4th. He will be in the afternoons for the remainder of the school year. A little tricky with naps, but we shall see. We will start with 4 afternoons, and can always go down to 2. Over the summer we decided not to do the summer program, so he will receive his services at our house. In the fall he will be going 4 mornings, which will be great!
I am very happy with how things turned out and feel like another weight has been lifted!

Doing Better!!!

2009-03-24T19:06:00.002-04:00

Frankie is doing much better from his surgery!! It took him, and me, about 2 weeks to feel back to normal. He is playing all the time now, happy and going outside. The sun is not bothering him with his sunglasses on! It is nice to have our Frankie back!! And we are done with the eye drops! : )

IEP Meeting Tomorrow!!!

2009-03-24T19:05:00.002-04:00

I am a little nervous, yet excited too, because I think Frankie will get the services he deserves!!

Genetics

2009-03-24T16:58:00.003-04:00

We took Frankie to his geneticist last week. We had been there 2 years ago and he
had one mutation on the OCA 1 gene, so he said he probably had that, but not
100% sure.
Today he told us that he does not have OCA 2, that was ruled out through genetic testing. He are going to test for 3 and 4 and revisit 1. I guess it is odd that only 1 mutation was found.
I just want to rule out HPS, Hermansky Pudlack Syndrome, characterized by bleeding tendencies and lung problems. He said the genetic testing for that was not too
accurate, only 10 % correct. But they can do a blood platelet test, but he
wasn't sure who even did that test.
I have found out from my kind online friends that there is a doctor in MN that will test the blood through electron microscopy. So when I get the results of OCA 3 and 4, I am going to ask for the HPS test, as well.
Frankie will have to have another blood draw, not looking forward to that after all the trauma from surgery! So we will wait a month or so. Poor little guy is so afraid of things now, I think he thinks everything is going to hurt him, like the surgery did! : (

Certificate of Blindness

2009-03-17T20:12:00.002-04:00

Today, after I met with the lady from the MA Comm for the Blind, I received mail for Frankie. It was a certificate of blindness for him. : ( It struck me as sad. I have known since he was a baby that he would not see real well and probably wind up legally blind, but a paper that says you are blind is still a little shocking. So it's still sinking in a bit. I am waiting for something happier to happen!

Happy St. Patty's Day!

2009-03-17T12:34:00.003-04:00

The kids are wearing green. We made green cookies yesterday to have today after our reuben's.
Today was Frankie's first day back to his EI class. He did pretty well, but he missed me a bit too.
His O and M specialist came again today to see him before the IEP meeting next Wednesday! Yikes, it's almost here!
A lady from the MA Comm for the Blind also came to observe him and talk to me. She will come to the meeting, as well, to advocate for services for Frankie, she seemed pretty positive about it.

My own IEP letter, what I want for Frankie

2009-03-16T22:53:00.001-04:00

Frankie was born in May of 2006, greeted by myself, my husband and big sister Lizzy. It was not until he was about 4 months old that I started to notice his poor vision. I realized he could not track objects. A stuffed animal fell towards his face and he did not even blink. We took him to the eye doctor, and a diagnosis of ocular cutaneous albinism was given. I watched as he did not respond to any flashlights or objects. We were told he knew us by our voices, not our faces.

Frankie will turn three on May 4. There are a few reasons why I feel he would benefit from an IEP and services in the Westwood Integrated Preschool. He recently was diagnosed as being legally blind. He gets around so well in familiar places, is it sometimes easy to forget his vision impairment. He also is cognitively proficient, in things that do not require vision to learn. An example; he knows how to count to 12, sing many songs and has been potty trained since 2.7, yet he does not know his colors well, has trouble with busy puzzles and cannot always identify the food on his plate.

My first concern is the classroom setup and teaching methods. He will not be able to see a book or item that a teacher is holding up in front of the classroom. He will listen, not seeing what is going on, for just so long, then he loses interest and fidgets, gets up, etc. He will need a lot of adaptations so that he can get the most out of these types of lessons and circle time in the class. The classroom also needs to be set up the same way, so that he gets used to it, with his seat facing away from the window.

He does not see a great deal of what is happening in the classroom. If he drops something on the floor, he has a really hard time locating and finding it. Things with similar colors blend together and he has a harder time picking something out. He would not easily be able to recognize someone or something across the room. At early intervention class the other week, I told him there were bowling pins, but he could not see them across the room, and was asking where they were. I feel that a Teacher of the Visually Impaired would be beneficial to Frankie in the classroom, as well as the teachers.

He also needs extra help learning things at a close range. He has trouble pointing out animals and objects in books. For many animals, he will say it’s a sheep. He gets very close to a picture, to see it.

An orientation and mobility specialist would also benefit Frankie. He trips over toys, small obstacles or door jams in his way. In new surroundings, Frankie may trip and be hesitant to explore. He has trouble with stairs, and he can be very slow and cautious. At a familiar playground, he has trouble finding other pieces of equipment, if they are far away. On apparatus at unfamiliar playgrounds, he will sometimes stop and put his hand down, and shuffle very slowly.

My last concern is the sun sensitivity that goes along with albinism. He needs sunglasses and a hat while outside and should not be in the sun for long periods of time. Any extra shade on the playground would be beneficial to Frankie, as the sun makes it harder for him to see.

As there are special education teachers already at the Integrated Preschool, it seems like a great place for Frankie to get the services he needs. I have 2 other examples of how hard things can be for him with his vision limitations. He didn't know his EI teacher (whom he has known for 2 1/2 years) when she had a hoarse voice. He kept asking me if that was really her! He was with my parents and my mother took him to our bathroom, and he was asking her if they were in our bathroom or theirs. He could not distinguish where he was.

Recovery

2009-03-14T21:11:00.002-04:00

Last weekend was a hard recovery for Frankie. He woke up Saturday morning throwing up, but there was nothing in his stomach to throw up except some saliva. He did start eating slowly and drinking, so that seemed to help. He was still in a lot of pain over the weekend. When he finally walked a bit he was very wobbly and off balance. It did go away, I think due to him getting used to his "new" eyes.
We used a lot of Tyenol, and the eye ointment/drops have been hard! We went for his follow up appointment on Wednesday and the doctor said his eyes are healing nicely!!! The appointment was hard, Frankie was very afraid! But it is done, we do not need to go back until May!
It was a hard recovery for Frankie and for me to! To see your child in pain is one of the hardest things! I was shaking from it for days. I still feel sad, off, not quite happy. But we had a nice night out to dinner tonight.
He has been extremely light sensitive from the surgery too! We had blankets on the windows and the lights dimmed for a while. Today he was outside for a few minutes and didn't say his eyes hurt. So we are getting there!

Surgery - March 6th

2009-03-14T21:01:00.003-04:00

Frankie had his surgery last Friday, March 6th. I was nervous, but then felt calmer as we were there! It got postponed from 8:30, to 10, 10:30 and finally 12! A long time for a small child to not eat! He did well waiting, we watched some TV, read books.
Then I suited up in the mask, surgical suit, hat. We dressed Curious George up too and then Frankie did! He was excited about it and liked the mask. We told him he was going to go into another room and smell strawberries, and he was excited! We got in there and laid him down and he was upset, crying though the mask, it sounded so odd! He went out pretty quick.
He was in surgery a good hour and a half, he had 6 muscles worked on. 2 to help his strabismus (crossed eyes) 2 to help his nystagmus (wiggly eyes) and the other 2 to help his null point/head tilt.
In recovery I was surprised that there was blood coming out of his eyes, so sad. He woke up and wanted me and I sat with him for a few hours before we went home. At one point he got the IV out and blood was spurting everywhere!
We got home in the later afternoon, my parents and Lizzy were surprised to see how bad his eyes looked. He just laid on me and slept or cried out in pain that his eyes were hurting, so sad!!!! He had a hard time sleeping, I wound up sleeping on his floor on the couch cushions!
He was in enough pain that I do not think I would do it again.

Pre-Surgery

2009-03-14T20:54:00.003-04:00

I am finally able to catch up writing about Frankie's surgery, he had it a week ago! We stayed in most of the week before, so he wouldn't get a cold. So that was a long week. My parents came up the day before, that was so great and helpful.
I was sooo nervous leading up to surgery! And poor Frankie didn't even know it was coming!

This week's Evaluations

2009-02-27T21:13:00.002-05:00

Frankie was quite busy this week!
On Wednesday we went to the integrated preschool again and he had 2 evaluations. First was physical therapy. He had trouble with throwing, catching, aiming, stairs. I talked to the teacher about his being much more cautious in unfamiliar environments, and my concerns with him on the playground. It seemed that she would recommend him for services with her.
He also had his educational evaluation, and did well on that; counted to 12, knew shapes, etc. I got to talk to the special education teacher in the classroom and she was very nice. So I felt more positive about the process after I left.
Thursday an orientation and mobility specialist from the Carroll Center came to the house while his EI teacher was here. So she observed him a bit and we got to talk. She will recommend services for him as well, especially on the playground. She will also come to see him in his EI class in a few weeks.

Bowl-a-thon 2009!

2009-02-22T13:48:00.002-05:00

We hosted our 2nd NOAH bowl-a-thon yesterday, to raise money for NOAH and people with albinism. We had about 60 people bowling with us. There were 5 people with albinism, 2 adults, 2 children (one being Frankie) and a baby. Everyone had fun bowling, the little kids just kept rolling many, many bowls down their alley. : )
Then we headed to Papa Gino's for pizza, cupcakes, cookies and M & M's, yum!
It is still amazing to me that we know so many people with albinism now! One of the families we met for the first time, their little 9 month old boy has albinism. It winds up we go to the same doctor. We are going to get together again soon so I can give the Frankie's outgrown sun protective clothing.
It was a great day, can't wait till next year!

Relying on Hearing

2009-02-19T20:44:00.002-05:00

Today Frankie's EI teacher came and she had a hoarse voice from a cold. I told him she was coming and she came in and said hi. She was talking to me for a minute and and he kept asking me, "Is that Ms. R"? He wasn't sure because her voice sounded different and I guess he really does not see faces that clearly. We do not realize how much he relies on his hearing and tells people by their voices. It was just surprising to me.
I am still thinking about his legally blind status too. I got something from the MA Commission for the Blind in the mail today because he is registered as a legally blind person in MA. I have not had a chance to read it, but I am still getting used to it and it is still sinking in, I think.

Walden Pond

2009-02-18T20:18:00.002-05:00

On Sunday we went hiking at Walden Pond. What a nice relaxing place to be. The pond was frozen, some people were skating on it. We did a kids' guided hike and walked about a half mile to the site where Thoreau's house stood. Frankie did good for that part and Lizzy loved the whole thing! Then we hiked back on another trail for a 1/2 mile, but it was a bit more snowy/slippery, a little harder for Frankie. It was still a fun activity, the lake was beautiful and the kids enjoyed going in the replica of Thoreau's house too!
I can't wait to go back in the spring! It is only $5 to park your car, and then you can enjoy this wonderful park.

Vision Evaluation

2009-02-15T19:12:00.003-05:00

Frankie had his vision evaluation by a TVI from the Carroll Center for the Blind, on Tuesday, during his EI class. She said she would recommend that he receive services from a TVI (herself) at preschool. So I am relieved about that! She seems really nice and Frankie liked her too.
We talked about braille as a backup to reading, and she said it might be a possibility, because his eyes will get fatigued. But we will wait and see when he is a bit older. She also said she would se something up with an O and M specialist!
Frankie also got his prisms off this week! Less than 3 weeks till surgery. : ( I feel more and more anxious.

Happy Balentine's Day!

2009-02-15T19:09:00.002-05:00

. . . from Frankie! : )
Hope everyone had a nice day! Lizzy and I had a girls day out and had pedicures, lunch and an American girl game and craft time at the bookstore. John and Frankie went to "My Gym". In the evening we had dinner together, made and ate cupcakes, and played "hide the hearts"!

IEP update

2009-02-09T21:06:00.002-05:00

We have the appointments set up for Frankie's evaluations and his IEP meeting! Last week he had his occupational therapy evaluation. He did well at many of the activities, drawing a circle, line, stacking blocks. He had some trouble making a block train that the teacher made first. He did a puzzle, he just took a little longer than normal. Didn't do too well on his colors.
Tomorrow is his functional vision evaluation at his EI class. I am nervous because there is not an orientation and mobility appointment set up yet. Hopefully I can get that squared away tomorrow too.
I wish I could stop feeling like a bundle of nerves ALL the time! I really can't wait until spring, when Frankie's surgery and IEP and done! And it's nice weather!

Gold Medal!!

2009-02-08T21:36:00.000-05:00

Last weekend, Lizzy was in her first skating competition and won the gold medal!! She was so excited, it is hanging right by her bed! She did all her elements well, and deserved that medal. It was a really fun day and we went out to dinner to celebrate.
Go Lizzy!!

Fun Weekend

2009-02-08T21:31:00.002-05:00

We had a jam packed and fun weekend. Lizzy had her Saturday morning skating, then John took the kids to the library while I went to a school planing meeting. Then we headed to Cape Cod to our favorite lunch place, The Dunbar Tea Shop, so yummy, the kids like it too. Lizzy loves the tea! Then we walked on the boardwalk to the beach and walked on the beach a bit. It was windy, so not too long. : )
Today after CCD and church, Lizzy and John went to the zoo, while Frankie and I went skating. He really wanted to go! He was holding onto his crate at first, but then got more brave and was skating over to me by himself, a little bit away! He loved it, I think he would still have been there, if he could! He has a lot of perseverance!!

Doctor Updates

2009-02-05T14:17:00.003-05:00

So much has been going on, I feel in a whirlwind that will not stop! We went back to his eye doctor last week, in the snow, to get prisms stuck on his glasses. He does not seem to mind them and still gets around fine. They are making him very tired, because he has to struggle more to see, I think. They blur his vision, but are supposed to help align his eyes better before surgery. They are only on for 2 weeks! The other day is his EI class, his teachers said he was almost falling asleep!

He is having strabismus and nystagmus surgery in March, I am quite nervous and upset about it, even though I have been through the strabismus part with Lizzy. He will be having both eyes operated on, 2 muscles in each eye.

He also had bloodwork last week for genetic purposes, to see which tye of albinism he actually has. Next week he has the pre-op appointment and another appointment to get the prisims off, so we are doctors' offices a lot!
He has started the evaluations for preschool also, I will save that for another post.

My Gym, your gym

2009-02-05T14:11:00.002-05:00

Frankie had his second class at My Gym today. He has liked both classes and asks, "Mama, when can we go to your gym?" It is so cute, and a logical conclusion! : )
The first week one of the instructors remembered him from last year and put tape on the bottom stairs of the ladders, so he knew when he was at the bottom. That works well for him, because the blue stairs and blue rug and difficult for him. The other instructor did not know his vision limitations and was abrupt with him when he was not sure where to go, sat on the wrong line, etc. So I talked to her today and she seemed to be more helpful towards him. So it is a good winter activity and he can practice his climbing, jumping, gross motor skills.

Frankie's Glasses

2009-01-26T21:12:00.002-05:00

As soon as we got back from Disney, we picked up Frankie's new glasses!! He was so excited, as was Lizzy! : ) They only have a slight prescription, I don't think they do too much to help his vision. We are going back to the doctor on Wednesday to get the prisms put on, we'll see how good he wears them then.
He is doing well keeping them on now!

Disney World!!

2009-01-26T10:32:00.003-05:00

We got back from Disney World last week! It was so much fun, we are planning our return trip in a few years. : ) Our favorite parts:
Winnie the Pooh breakfast at the Crystal Palace in Magic Kingdom
Buzz Lightyear laser tag ride in Magic Kingdom
Light parade and fireworks
Meeting Mickey Mouse
Getting pictures and autographs from characters
Little Mermaid show and Playhouse Disney show in Hollywood Studios
Toy Story ride in Hollywood Studios
Eating in Mexico in Epcot and the boat ride
Spaceship Earth ride in Epcot
Our hotel suite at Nickelodeon Suites, 2 bedrooms and yummy buffet breakfast
Warm weather (it was 7 degrees in Boston!)

20/200

2009-01-13T18:28:00.001-05:00

Frankie went for a low vision evaluation today at the Perkins low vision clinic. They used the Lea pictures at a distance and up close, and his acuity came out to 20/200. I am still a little shocked. I knew when he is usually tested with the teller cards, the acuity of 20/60 was better than he really was, but now I know that he is actually legally blind. So I am still digesting it and trying to get a handle on it.
It may help us as we navigate the IEP process, getting him into the integrated preschool. I would think a child who is legally blind should get an IEP and services.

Motto Lotto

2009-01-09T20:42:00.002-05:00

I am always proud of the kids, but I was especially proud of Lizzy today. Her school has a special motto, "Work hard, do the right thing and be your best self". They sometimes have assemblies with the whole school called "Motto Lotto", where they talk about examples of the motto, etc.
Lizzy planned, with some of her classmates, a Motto Team and they came up with a motto challenge in the lunch room. Tables that are living the motto for the week, will get a special privilege on the last day. It will start out with just first grade next week, and then the whole school. She came home with what she will say to the whole school on Monday, to present the idea. Her and 5 classmates will get up and get to use the microphone too! She has been practicing her part all evening, she is so proud and she seems soooooooo grown up! : )

Reasons for an IEP - Part 2

2009-01-08T17:53:00.003-05:00

I looked at the reasons I had written back in July of this year. I am going to add/modify for Frankie now.

He has trouble pointing out things/animals etc. in books.
He has a hard time distinguishing some colors.
All animals are a sheep to him.
He has trouble with stairs, very slow and cautious.
New surroundings make for more of a chance to trip and he does not want to explore as much.
He trips over the bottom of door jams.
He trips over toys, small obstacles in his way.
He sometimes does not know his milk is there when it is right in front of him.
He cannot see a storybook when it is held by a teacher at the front of the room, even when he is sitting on the floor right in front of her and she is in a chair.
He needs his sunglasses and hat while outside and should not be in the sun for long periods of time.
He has trouble stacking small blocks.
He takes longer to scan when doing a puzzle to find where the piece goes.
He also cannot do a puzzle if it is too busy.
Things with similar colors blend together and he has a harder time picking something out.
He would not easily be able to recognize someone across the room.
At a familiar playground, has trouble locating other pieces of playground equipment, if they are far away.
At some unfamiliar playgrounds, has trouble walking across them; will stop and put his hand down, and shuffle very slowly.
He tilts his head down to help still his nystagmus.
He gets very close to a picture/book, to see it better.
If he drops something on the floor, he has a really hard time locating it.

I'm sure I will think of more later!

Lizzy and Frankie

2009-01-07T13:23:00.002-05:00

I am always so happy to see Lizzy and Frankie together and the bond that they have! We were talking about college with Lizzy and we were saying how Frankie would be in high school when's she's in college and would miss her. She said she would go somewhere close by so she could come home and drive him to Vellos (his favorite restaurant)! So cute and caring!! : )
She has been helping me get him to eat too. She tells hm to launch his food up in the air and then put it in his mouth! Seems to do the trick!

Transistion/ IEP class

2009-01-07T13:20:00.001-05:00

We were to stat our transition/ IEP class today at Perkins, but could not because of the snow and ice. I was looking forward to getting more info on the process, specifically related to vision. I feel the more information the better! More to follow next week.
I dropped off Frankie's paperwork at our integrated preschool yesterday, now waiting to sign and set up assessments for him in the next month or 2. I am going to have an OT, PT, mobility and vision assessments for him.

Harvard Square

2009-01-04T20:11:00.002-05:00

Yesterday we went to Harvard Square. When driving by Harvard, Lizzy said, "It's even bigger than the Martha Jones!"(her elementary school) I thought it was so cute!

We went to the Harvard Museum of Natural History. There were many exhibits with animals, insects, dinosaurs, fossils and a storytime. The kids really enjoyed it. Lizzy learned a lot and Frankie enjoyed pointing to everything and saying, "What's this?"

We then headed to the Curious George store, Curious George and Friends. Frankie, of course, was thrilled and kept saying there were George's everywhere! Lizzy and I did birthday shopping for him for his birthday in May. : )

Ice Skating

2009-01-04T20:05:00.002-05:00

Lizzy, John and I took Frankie skating for the first time today! We went with the kids' auntie and cousin, so it was a fun time. We went to Larz Anderson Park in Brookline, it is an outdoor refrigerated rink. They have an indoor place to put skates on, skate rentals, snack bar.
Frankie loved the ice and skating. There is a small rink on the side with milk crates for the kids to push. He pushed his 2 milk crates all around and loved it, he could have kept going and did not want to leave! I guess we need to get him his own skates now! It was really a fun morning for us all! I can't wait to go back next week!

Doctor Visit

2009-01-02T18:28:00.003-05:00

I am a bit behind, Frankie had his eye checkup in the beginning of December. His vision with the teller cards, seemed to be at 20/60. They tried to get him to see the distance pictures, but he could not see them well enough to identify them. He did say a spider monkey, though, that was too funny! He also looked at pictures up close and could name some of them. The phone from the 1970's he had no clue what is was because he never saw one before!
His eyes are crossing more, each one takes a turn and he uses one at a time. So he is going to get glasses, they should be ready for pickup soon! We got ones with sunglasses that clip on. Then the doctor will stick on prisms that will blur part of his vision to get the eyes to go back to where they should be. After a few weeks, we will go back again and the doctor can see if the strabismus improved, which will aid in surgery. So he will probably end up with surgery towards the end of February. I am nervous about it!
We went to Lizzy' doctor for a second opinion, more on that in another post. Frankie is very excited about the glasses!

Happy New Year!

2009-01-01T20:23:00.001-05:00

Happy 2009!!

We watched our town's fireworks tonight, from Lizzy's window, nice and warm! The kids loved them, Frankie had never seen them before. He cried when they were over and he had to go to bed. Tonight is an early night, since Lizzy stayed up to midnight last night! : )

Looking forward to our trip to Disney this month is 2009!

Hopefully everything with Frankie's eyes and surgery will go smoothly. More on that later.

Goodbye 2008

2008-12-31T16:24:00.002-05:00

We had a good year! Lizzy started first grade, and loves it! She plays the violin, does tap and ballet, skates, and became a brownie. Frankie turned 2 and got potty trained and moved up to the big boy class as EI.
We had a wonderful Christmas and are snowed in for New Year's eve! Lots of snacks for
tonight! : )
Cute story from Christmas; we woke up and opened gifts from Santa and then had breakfast. While we were eating. Frankie said, "Where is Santa?" We kept telling him that Santa was coming, so he thought that he would be there for breakfast. : )
Lizzy didn't believe in Santa this year, but she is playing along for Frankie.

Potty Update!!!

2008-12-31T12:57:00.002-05:00

Frankie is now officially wearing big boy underwear!!! He loves his Cars ones, although we are still on the lookout for Curious George ones. He goes to the potty, no problem and keeps his underwear dry. He goes out in them all the time now. It really only took a few days and he trained himself. We did a sticker reward system. Now we just have to get him consistent with number 2!
So it is quite exciting and the whole family gets excited with him! Lizzy was the one who made him a potty sticker chart.

Christmas Activities

2008-12-31T12:28:00.002-05:00

We have been busy with many Christmas activities. The other night we went to the Stone Zoo in Stoneham, MA for their Zoolights celebration. We usually go before Christmas, but it was much less crowded after, which was nice. The night was also quite warm, we didn't even need hats and gloves. The zoo is covered with lights, Frankie liked touching them. : ) It is like walking in a wnter wonderland. There are some animals on exhibit, including reindeer. There are a few small kiddie rides and a section with a mini trian village, storybook character display, etc. The kids really enjoy it every year!
There is also a great lights display in Millis, MA. You can drive your car through the owner's property, quite large. It takes about 15-20 minutes to get through, stopping to look at everything. The weekends can get quite busy, the weeknights are better.
We also went, last week, to the Bass Pro Shop, in Patriot Place, Foxboro. We had been there before the holidays and it was fun for the kids to see animal statues, an aquarum, climb on the boats, etc. But for Chrstmas, they had a Santa's Wonderland, complete with Santa, crafts, decorations, etc. The kids got to see Santa and the picture was free!
I am hoping, this weekend, we can still make it to Edaville's Festival of lights. We have been to the park in the summer/fall, but the lights diaplay sounds very beautiful and fun for the kids! I will let you know if we go.

Merry Christmas!

2008-12-25T21:08:00.002-05:00

Merry Christmas everyone! I hope everyone had a wonderful day with family and friends!
I plan to be posting more! There seems to be a lot going on right now. I will be posting soon.

Initial IEP Process Meeting

2008-11-15T21:45:00.001-05:00

We had a meeting about beginning Frankie's IEP process. His EI teacher and TVI were there, so that was great for me. So I understand more about the process. The sad news for me was that his TVI will not be following him when he gets into preschool! Both of his teachers have been with him since he was 5 months old, and I will really miss them. I really want to keep in touch and get together!

Potty

2008-11-15T21:32:00.001-05:00

Frankie told me he had to go potty for the first time the other day!!! We had dropped Lizzy off at her violin lesson, and were walking down the hall of the school. He said he needed to go and we went in and he did. That was the first time he had told me and went. So we had banana bread that night for a special treat. : ) He hasn't told me again, but he is consistently getting better.

"Tea House"

2008-11-15T21:21:00.002-05:00

I took the kids to the Dunbar Tea Room in Sandwich, MA, on Cape Cod, this past Tuesday, since Lizzy had off from school! We have been going for about 1o years now, and refer to it as the "Tea House". It is a small restaurant with a great menu that serves afternoon tea; tea, scones, sandwiches, desserts. It is delicious!! Lizzy and I, of course, love it. Frankie has been when he was younger, but I wasn't sure how he would sit through it. So I brought some new Curious George coloring sheets, stickers and big crayons. He was entertained while we waited for our food to arrive. Lizzy and I had tea, served in mini tea pots with a cloth warmer, and a strainer to put on top of your cup while you pour. She got the afternoon tea; scones with jam and cream, finger sandwiches and small desserts. I got the Cumberland crumpet melt, a crumpet with chicken salad, cranberries and melted cheese. : ) Frankie ate a bit of scone and some fruit and yogurt. It was a great lunch and Frankie did well.
We then drove to a boardwalk that goes out to the ocean. We walked on it to see a great view of the beach and ocean. It was a great day, we all had so much fun!

Kidtoon Films

2008-11-07T14:48:00.002-05:00

Frankie saw his first movie over the summer, with Lizzy and Daddy. They went to see a Thomas the Train movie, as part of the Kidtoon Films program. This program is at many theaters across the country, that have G rated movies for kids for $3.50, every Saturday and Sunday (or Sunday and Tuesday, now, in MA). I hope to go again this Tuesday to see a Barbie Christmas movie. Check it out, it's a good rainy day activity, too.

My Election Thoughts; as Pertaining to Frankie

2008-11-06T20:48:00.003-05:00

I voted for life in this election, something that is very important to me. I have always been pro-life and I have felt strongly about it. But now, having a special needs child, it is even more of an issue for me. To think that someone would abort a baby because it has albinism, really makes me sick. Because of this, I needed to vote for life.
So needless to say, I am a little sad from election day. I feel that the unborn will be treated with less respect than before. This makes me sad, and it is hard to explain about having a child with special needs, but it makes it even sadder.
I do hope that one day unborn children will be treated with more respect. And that people of difference in general are treated fairly.

1 2 3 and A B C

2008-11-06T20:42:00.003-05:00

Frankie counted to 10 today and said all his ABC's! Now we need to work on colors and shapes. The shapes are coming, but colors are hard. I'm not sure if people with albinism have more of a chance of color blindness? I don't think so.

Some other things that made me happy today:
Lizzy playing her violin
Chicken rice bake
Frankie playing with his friend
Reading together