"Don't Sweat the Small Stuff"

A year and a half ago, we found out Frankie had albinism, and everything changed. Now, I am happier that I was before the diagnosis, but life will never be exactly the same. Going through an event like that is life changing and I find myself looking at things differently than I used too.
As an example, my car was totaled this past November, we were unharmed! Then about a month ago, my brand new mini van was hit parked in font of my house. I just got it back on Friday! Around the time I totaled the first car, I broke my computer, fell down the stairs and my grandparents were both in the hospital. If this would have all happened the fall Frankie was diagnosed, I would not have been able to handle it. But now I was able to put most of it in perspective. The main issue with the car was that we OK, and we were! It was a pain to make many phone calls, have a rental, etc, but it wasn't what really mattered and it wasn't all that important. Now we even joke about our bad luck with cars. : ) A car, computer or any material object can be fixed or replaced. My fall was not that bad and my grandparents are both at home.
So Frankie having albinism has changed me, but definitely for the better. I can actually relate to "don't sweat the small stuff". Sometimes I still do sweat the small stuff, but not nearly as often. When I do, I find myself looking as the situation again and asking if it really deserves this much attention or worry. Usually it doesn't.
I'm sure there are others out there who can relate?

New Resources

I finished up my "Inclusion and Mainstreaming" class yesterday and just wanted to share some more resources I found. I will list them in the resources section, as well.

Infant See
Texas school for the Blind and Visually Impaired
ADVISOR
American Foundation for the Blind
Low Vision Center

Perkins Panda

On Christmas Eve, a box arrived from Perkins School for the Blind. I was curious as to what it was. It was a Perkins Panda kit, complete with early literacy and braille books, activities and toys! It contains Perkins Panda himself, a large stuffed bear, 3 books with print, Braille and tactile parts to feel, 3 cassettes and 3 activity guides. The stories are really cute and fun to read; "Belly Button", "Going, Going, Going", and "Perkins Goes Out". The cassettes have songs and extension activities. The activity guides have activities for singing, everyday experiences, playtime and story time. There is also a story box with manipulatives that go with the stories. Frankie loves playing with these; cups, plates and a picnic blanket. He likes Perkins the bear too, we need to do more with the books and tapes. I will report back when we do.
On another note, I finished my class today! It was great, I will write more another night and add more resources I found!

Happy Easter!

We had a fun day, starting early with an egg hunt, church, and brunch with the family! Frankie and Lizzy both enjoyed it. He was too young to hunt last year, so this was his first one. He did have a little trouble seeing some of the eggs. The ones on his tool bench he did not seem to see, he kept going to it and then passing by without seeing the egg. They must have blended in. He did pretty well hunting later outside.

Zoo Review

Today we went to the Stone Zoo, for the annual "Bunny Bonanza". The Easter Bunny was there for pictures, along with crafts, face painting, a moonwalk, music, prizes and, of course, the animals! We had a fun afternoon, despite a chilly picnic to start! Frankie even sat on the bunny's lap. There are a variety of animals, some of them are up close, so a visually impaired child can see them better. There are some indoor exhibits, as well, to get in out of the sun. Frankie did quite well with his sunglasses, baseball cap and hood. : ) Lizzy really enjoyed the crafts and planting sunflower seeds.
Have a blessed Easter tomorrow!

First Legally Blind Governor

Today the first legally blind governor has taken office in New York! I am excited about this, it is such a positive step for visually impaired people, and awareness of vision impairments.

From CNN.com:
"Paterson, 53, who is the state's first African-American governor, is also New York's first legally blind governor.
'Let me reintroduce myself, I am David Paterson and I am the governor of New York State,' Paterson said to roaring applause.
He is a leading advocate for the visually and physically impaired. His 2004 speech at the Democratic National Convention marked the first time a visually impaired person addressed the convention. He is a member of the American Foundation for the Blind, serves as a member of the Democratic National Committee and is a board member of the Democratic Legislative Campaign Committee."

Happy St. Paddy's Day!

Frankie said "Paa-ddy's" this morning. : ) The kids wore green and we are going to make green cookies this afternoon. Have a fun day!

Dancing up a Storm

Lizzy brought home a bag with a CD, books and items to dance with; scarf, balls, etc. We had to listen to the CD together as a family and dance! It was quite fun. Lizzy was doing a lot of her ballet moves. Frankie was running around with her and really got into it too. I had to write about it in the parent journal to bring back to school. I wrote about our favorites, what Lizzy and Frankie did and the books we read to go along with it. It got me to thinking about how fun it is just to do simple things together. Kids don't need expensive activites to keep them happy. Dancing up a storm in the living room or climbing the slide in the back yard is great fun and great family bonding!

Getting to be a big boy!

Frankie went to a friend's birthday party today who was turning 2! He has been to family birthday parties before, but this was his first friend's party. He did really well, followed directions and had fun. He sat for a long time eating his cake with his spoon, he just looked like such a big boy! I am amazed every day how much my children grow and learn. : ) And how fast it goes by! I try to slow down and just enjoy them. : )

Perception is not Reality

A fellow mom of a child with albinism did this great albinism awareness video! Check it out!
For those of you who know him, see if you can find Frankie!

Class update

I am taking a class, Inclusion and Mainstreaming" with U of Phoenix, as I mentioned in a previous post. I am really enjoying it, and we get to chat with the other classmates on the message forums. I taught first grade for a few years out of college, before my 6 year old Lizzy was born. But I feel as if I don't have as many classroom examples to give when "chatting". So I find myself talking more and more about Frankie. : ) I am nervous already for when he goes to preschool, so talking about it always helps!
Speaking of "chatting", I finally joined the NOAH Albinism Online Community. I love chatting with the other moms on the "parents of children with albinism forum". It's funny, because I think I came across the AOC when Frankie was first diagnosed and I was researching albinism and NOAH. But at that time I really had no desire to talk with others. It would have only made me sadder, if that makes any sense?
Back to the class, I am doing my final paper on aspects of inclusion for visually impaired children. So I am excited to do more research and I will post a bit of it too. : )

Climbing the Slide!!

I am always so excited when my children do something new. Frankie mastered climbing the rung ladder on our swing set up to the slide. He loves it now and just wants to keep climbing up, and going down the slide. He says "up, up, up" and then, "down, down, down".
It is fun to watch how happy he is about it!

And I almost forgot, he tries to sing "Twinkle, Twinkle, Little Star". It is more like "inkle, inkle, la, la, la, . . .hi", but he is getting there!!

It's Getting Warmer, and Sunnier

As the spring is approaching, I have been thinking more about sun protection for Frankie! He loves hats, so that is great. Last year, I felt like I did not know what I was doing in regard to sun protection and I was quite nervous about it. But we made it through the summer and got used to applying sunblock and wearing hats.
I feel a little nervous again this year, but I know that once we get into the routine, it will be fine. I know he will be out and about more this summer because he is walking and loves to keep up with his big sister!
I like to use Banana Boat Baby tear free, the best.
What do others use?

Random Thoughts on Lizzy

Everyone loves
Lizzy!
Into reading and writing, she is.
Zoos, parks, skating, ballet and soccer she enjoys.
A wonderful daughter and friend to all.
Best big sister to Frankie!
Eats strawberries,
They are her favorite!
Happy is she!

Lizzy is a very happy kindergarten student. She enjoys all kinds of things and likes watching "Hannah Montana" on TV now. She lets Frankie play with most of her toys. She is getting to be a good swimmer and can jump into the deep end and swim to the side! She loves to help around the house and with Frankie. : ) She is well loved!

Random Thoughts on Frankie

I was just jotting down thoughts about Frankie and decided to come up with this poem. : )

Full of life, he loves to
Run and meet Lizzy at the door.
Albinism he has, but his eyesight does not slow him down.
Nightly he loves to sleep with Curious George.
Kitchen sets, and pretend cooking are fun for him.
Ice cream is a favorite treat.
Everyone loves Frankie!

Frankie is full of life, even with his albinism, his eyesight does not slow him down. He loves to be outside, wearing his many hats. Curious George is his favorite toy, along with monkeys, bananas, kitchen set, books, trucks, balls, songs, sheep and anything Lizzy has! He is mind-mannered and gets interested in what he is doing. He is well loved!
Maybe I will try rambling about Lizzy tomorrow. : )

Inclusion and Mainstreaming Course

I am starting a class on Tuesday, "Inclusion and Mainstreaming", online, with The University of Phoenix. It is my second class with them, I did another about early childhood special needs. It is so interesting to take these classes now in light of Frankie's low-vision, so I will keep you updated on the class throughout the next 3 weeks. Frankie will start preschool in the fall of 2009, so I have been thinking about inclusion and how he will get the best learning environment.
I also took a class this past fall with the Northeast Regional Center for Vision Education, part of UMASS Boston. The class was Visual Functioning, it included in-depth learning about the anatomy of the eye and it's functions and what can go wrong. I was fascinated, even though it was a lot of work and studying!

Frankie's First Haircut

Frankie got his first haircut today!!! We went to Snip-its. It was very kid-friendly, complete with TV's, bubbles, cool decor, lollipops and a prize! Since it was his first, Frankie got a certificate of bravery for his haircut and locks of curls! He did pretty well, only a few tears and a look of fear, but he held up well! We all went with him, Mama, Daddy and Lizzy. Lizzy even brought her own camera for the occasion, and then we headed to Bertucci's.

How far does Frankie see?

I have been doing a lot of thinking about how far Frankie sees, compared to other children his age. His vision is improving, but I am still not sure how far he can see. If he sits on the couch, which is about 8-10 feet from the TV, he does not see the TV well. He will get up and sit on the ottoman that is right in front of it. So I am pretty sure he does not see that far, clearly.
He is able to chase a ball across the room and find it, but he can probably do that without the ball looking perfectly clear. So I am trying to figure this out, I really want to know "how" Frankie sees, but I guess I will know more as he gets older and can tell me!
It is interesting, too, because I find myself thinking that other babies cannot see me from across the table. When Frankie was a baby, he definetely could not see us if we were not right next to him, and even then, I'm not sure.
But other babies, say 5 months or so, can see me across the table. I find myself smiling at them, thinking that they will not see me, and then realizing that they do, because they smile! It is just interesting to see how we bring our experiences with us and they impact future situations.