Goodbye 2008

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!!!

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

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!

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

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

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"

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

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

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

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

Election Day

Hope everyone got out and voted today! More to follow later.

Happy Halloween!

I wish everyone a happy and safe Halloween! I am heading out trick or treating soon with Fancy Nancy and Curious George! Later we will have a few pieces of candy and some toasted pumpkin seeds. Our pumpkin had 468 seeds!

LEA Puzzle online

Here is a great website about the LEA Puzzle. Your child can practice with the puzzle on the computer! Another fun way to learn the puzzle and it's relationships. Also teaches colors and spatial awareness. I am hoping Frankie can be tested with the LEA Puzzle when he goes for his next eye exam in December.

Updates and Halloween Fun

Frankie has been doing really well with the potty! He is still in pull-ups, but he goes on the potty almost every time he sits on it. We try to go every hour. So I think he will be there pretty quickly, which surprises me, I didn't think he would be this young. He will be 2 1/2 next week!

I have started things a little with the IEP process. We went to our integrated preschool and his EI specialist has sent in the beginning paperwork. I am happy thing are getting done, yet it is nerve-wrecking at the same time.

The kids are getting quite excited about Halloween. Lizzy is going to be Fancy Nancy and Frankie, Curious George, (big surprise)! We did a pumpkin picking hayride yesterday and a school Halloween party on Friday. Tomorrow is the library parade. It seems like there are many more Halloween festivities then when I was a kid! : )

Edaville

Last Sunday we went to Edaville in Carver, MA. It was such a nice fall day and they were having the annual cranberry festival. There is a 2 mile train ride past the cranberry bogs, on this weekend the cranberries are floating to the top and being harvested. There are many rides; carousel, flying dumbo, tilt-a-whirl, scrambler, ferris wheel and more. There is a playground and a train to play on, also an indoor playground. For the cranberry festival, there are also many vendors, cranberry juice tasting and cranberries to buy. We bought some cranberries and made homemade cranberry apple muffins and cranberry sauce.
The park also hosts a Day out with Thomas in the summer and fall. It is much more crowded on these days. There are other days with costumed characters and shows. Starting in November, the festival of lights starts for the holidays. We have not been, but I hope to go this season!

Frankie's 2 year Evaluation, Part 2

This past Wednesday, Frankie's EI teacher, another teacher and his TVI, all came to discuss his evaluation and ways to move forward to help him. He scored quite well on his evaluation, with his speech and cognition almost that of a 3 year old. He was low is gross motor. So we all made a plan together of areas to work on, gross motor being one. We also discussed helping him learn shapes, colors and distinguishing animals in a book. I felt it was very productive. We also scheduled the first IEP meeting for November, where I will learn all about the process. I am excited and nervous!

New Vitamin D Recommendation

The American Academy of Pediatrics raised the daily amount of vitamin D for children to 400 units. Vitamin D supplements will need to be taken by millions of children now. Since one of the best non-food sources is the sun, Frankie already takes a vitamin D supplement, but I am going to check with his doctor to see if he needs more. This new recommendation is an issue with children with albinism, since they are not getting the sun exposure.
Read the full article here.

Discovery Toys

I have been selling Discovery Toys for over 6 years now, I started when Lizzy was 9 months to make extra money and meet people with children. This fall I have tried to jumpstart my business again and have been asking many more people to host parties, buy toys or join my team. So it has been going well and it feels good to have my business take off! My goal is to pay for our trip to Disney World in the new year!!!

Frankie's 2 year Evaluation

Frankie Started Early Intervention 2 years ago this month. His EI teacher did his yearly assessment this week. He did really well! He had trouble with some fine motor tasks that required a lot of vision, but overall he did well. Next week, we will discuss the results, then it will be time to start thinking about his transition to preschool next year! I can't believe it.
And he went in the potty yesterday!!!

"Hammah Ontana"

This is just too cute! Lizzy, being 7, loves Hannah Montana. So she talks about her, sings her songs and has a poster. Frankie, of course, picks up on this and now says, "hammah ontana" when he sees her. : ) It makes me laugh.

Feeling Poorly

Does anyone have tips on strategies to still spend time with your kids and get things done, when you are not feeling well? I have been so exhausted, achy and having a headache, some days I don't think I will be able to do make it till bed! I know it will pass, but sometimes things seem longer when you are in them.

Starting to Board the Potty Train

Frankie started using Cars pull ups today, and was quite excited. He was sitting on the potty every hour or so this afternoon, no success on the potty yet. He is very eager to sit on it, and we got him a new book about the "potty train". He really likes that, and Lizzy made him a potty chart, so we can put stickers on it when he goes in the potty. I don't really know if he's ready, but we'll try it and see how it goes. I would like to switch to underwear soon, when he has some potty success!

Homework for First Graders

Lizzy has started her homework this week for first grade. Today she had a math game, which we played together this afternoon. She also has a reading log, where she needs to read or be read to for 15 minutes each day. While she is participating and doing the homework, I feel the reminding her to do it and keeping track of it falls to me. Which is just funny, how much of the younger grades' homework contains a lot of parent participation. I think it is beneficial for the students, but the parents are an integral part. It does help us to be diligent to read each day. We have always read a lot, yet this makes sure we read each for 15 minutes or more. Frankie gets involved because he loves to listen to Lizzy read each day!

I Received this Email From NOAH . . .

Dear member of the Albinism Community:

It is unprecedented for NOAH leadership to communicate with you in this way. However, this situation is dire and we believe you would want us to let you know. We write to advise you of disturbing human rights violations against people with albinism in Tanzania that call out for action by the world wide albinism community.

Tanzania is in East Africa. Recent reports published by BBC News tell of the murders of persons with albinism, including children, on the orders of witchdoctors peddling the belief that potions made from the legs, hair, hands, and blood of people with albinism can make a person rich.

People with albinism are being savagely hunted for their body parts. Official numbers say that 28 persons with albinism have been brutally murdered in the last 18 months. Sources within the albinism community there say the number of murders is much higher - perhaps closer to 60. The youngest victim so far is a 7 month old baby.

There is also evidence now that this practice is spreading beyond the borders of Tanzania. Two persons with albinism were brutally murdered in Kenya, and even more shocking there was a recent arrest of a man in The Democratic Republic of The Congo. The man was arrested because he was found to be transporting the head of a person with albinism. He told police he was bringing it to sell to a businessman, and that he was going to be paid by weight.

Into this crisis, an organization called "The Under The Same Sun Fund" enters.

The Under The Same Sun Fund is a Canadian nonprofit organization headed up by Peter Ash. Peter is a person with albinism, who is also a business leader and member of NOAH.

The Under The Same Sun team will travel with Rick Guidotti of Positive Exposure to Tanzania on a mission of mercy and education in October. They want to see how they can be of help to the albinism community there.

The Executive Committee of NOAH fully supports Mr. Guidotti, Mr. Ash and Under the Same Sun in their efforts and ask that you read the following information from Under the Same Sun and consider lending your support by reading and signing the online petition.

Your small gesture of support will make a difference. Please help today.

NOAH Executive Committee

---

Under the Same Sun Fund

"Our People" - persons with albinism in Tanzania are suffering and we need to do whatever we can to help. All of the details of the project are explained on the Under the Same Sun website:

www.underthesamesun.com

After you have taken a few moments to understand the issues I am asking you to DO TWO SIMPLE THINGS to help those living in fear of this unspeakable evil in Tanzania.

1. Please sign the petition on the website.

2. Email as many people as possible and ask them to do the same - sign the petition. Email everyone you can think of.

When we are in Tanzania during the week of October 21st it is likely that the team will meet with senior government officials, possibly the president of the country. When the team meets with such officials they want to be able to hand them a copy of a petition with thousands of names from around the world - imploring their government to convict the killers and provide protection to people with albinism.

So, please, take a moment now - go to the website - sign the petition and then email as many people as possible asking them to do the same! People you know from other countries are great as well. We want to show that people from around the world are deeply concerned.

Thank you for acting on behalf of Our People - our brothers and sisters with albinism,

Peter Ash

Under the Same Sun Fund

www.underthesamesun.com, www.positiveexposure.org, www.albinism.org

Happy 7th Birthday, Lizzy!!

Lizzy turned 7 today! It was a great day, and it is hard to believe how big she is getting and how much older. She seems so much more independent lately.
She got an America girl doll that looks like her, complete with glasses, she loves the doll named Lizzy. : )
Things that made me happy today:
Lizzy turning 7
Lizzy loving her doll
Apple picking on a beautiful fall day
Teaching Lizzy to ride her 2 wheeler
Apple dumplings with ice cream
Frankie singing "Happy Birthday" to Lizzy.

Brookfield Orchards

We went apple picking today at Brookfield Orchards, in North Brookfield, for Lizzy's 7th birthday! It was the perfect weather day and one of my favorite times apple picking. I have gone pretty much every year since I was a kid, I love to go in the fall. We have gone to Brookfield for the past 10 years.
There are plenty of apple trees, so it does not seem crowded and there is a lot of room. There is a playground, sandbox and hayride. The store sells homemade pies, dumplings, etc. The dumplings are delicious! There is a snack bar which sells lunch and the delicious apple dumplings a la mode. It is always a fun day!

Kid Friendly Recipes

I wanted to share a few recipes that are healthy, quick, easy, incorporate veggies and my kids like to eat!

Cheesy Loaf -
1 pound of ground turkey or chicken
2-3 carrots grated
1 tomato grated
1/2 zucchini grated
Combine all ingredients in a bowl with bread crumbs, pepper, onion powder, garlic powder and basil. Press into a baking dish and bake on 375 for 1 hour. For the last few minutes, melt pieces of cheese on top.

Spinach Quiche -
1 egg
1 small container part skim ricotta cheese
1 cup evaporated milk
1/4 cup parmesan cheese
2 packages frozen spinach (cooked and drained)
2 pie crusts
Combine and mix; milk, egg and cheese. Add in spinach, onion powder and pepper. Pour into 2 pie crusts. Bake at 375 for about 45 minutes.

Squash Soup -
2 packages frozen squash
1 package cauliflower (or broccoli)
1 can chicken broth
1 can water
1 cup milk
Combine in pot on stove with pepper, onion powder, garlic powder, cinnamon and cloves. Cook to a boil. Lower heat and simmer for 1/2 hour. Can substitute with other veggies too.

Fall is Approaching!

The mornings are getting crisper! The air is getting cooler and the days are getting shorter. I enjoy the fall weather, except for the days getting shorter. We are going apple picking this weekend, a favorite fall activity and one of my favorite days of the year!
I feel ready for the change, after the summer, which I love, it is nice to have cool weather and less sun. I am still diligent with sunblock, but the sun does not seem as strong. And as much as I like longer days, I am ready for earlier nights and getting everyone ready, it can be restful. So I am glad I live where the seasons change!

Thank You for the Birthday Wishes

Thanks to everyone who made my birthday special on Saturday by celebrating with me, calling, emailing, sending cards, gifts and wishes! It means a lot. It was a happy day and I am so looking forward to Lizzy's 7th birthday!
Frankie even sang his own "Happy Birthday Mama"!

Counting to Three

I was impressed today, Frankie counted the 3 stickers he had put on his baby. He pointed to each one and said the number, using one to one correspondence. I was surprised that he could point to each one and count it, it made me happy!
He is always surprising me! As is Lizzy, she takes her own shower now, puts herself to bed and mostly gets herself all ready in the morning. It seems as if she grew up overnight!
Today's happy list:
Lizzy reading to Frankie
Lizzy setting up her cradle, with blanket and pillow, in Frankie's room for his baby. : )
Playing outside
Eating with the kids at Vello's
Booking some Discovery Toys parties.

September 8, 2006

Two years ago, today, Frankie was diagnosed with albinism. It was one of the most shocking days I have been through. It is amazing how much had happened in these 2 years and how different Frankie is today! He is doing so well, it amazes me. He had his EI class today, he was happy to go and fine when I left. He was so excited when I came back to show me his picture of a bus. : )
Last year I felt a little sad when the fall came, because that was when he was diagnosed and I felt as if I was going back to that day. But this year I feel so much better!

The Best of Days, The Worst of Days

Today was Lizzy's first day of first grade and she loved it! She came home a bit tired and hot, so we went out to dinner to the Red Robin, and she lost her tooth. She was so excited and the waitress gave her a Red Robin pin! The restaurant has good food (burgers) and is very kid friendly, complete with a balloon as you leave.
When we got home, Lizzy asked me if the tooth fairy was real or if I took the teeth. I asked her what she thought and she said that I was the tooth fairy. I said yes and she is so upset!! I feel so bad!! Since she asked outright, I wanted to tell her the truth, but it would have been more fun to keep pretending and she would have been happy. I hope I did the right thing!
I don't know what's going to happen with Santa this year!

Back to School

Lizzy and Frankie have been playing together so nicely lately. He is actually at an age where he can play with her more and they entertain each other! It is nice!
Tomorrow is Lizzy's first day of first grade! He is going to miss her a lot. It is always an adjustmet for me too, when she goes back to school. I miss having her to talk to! But first grade should be an exciting year! I keep telling her that I learned to read in first grade, and she says, "I already know how to read!" I know she will do well.

Canobie Lake Park

We went with our friends to Canobie Lake Park last week, in Salem, NH. We had a great time! First of all, there is a lot of shade, and plenty of rides for all ages. There were plenty of benches and
tables in the shade and lots of trees as you are walking. There are kiddie rides for kids under 36 inches only. Bigger kid rides are also plentiful, Lizzy and her friend had many to go on! Many of the rides are good for everyone, the sky ride, train, boat ride, ferris wheel, etc. There are many meal options and the park stays open at night. We stayed until it was getting dark and it was relaxing to be there and not even think of the sun! This was a great park and we had a fantastic time!

Another Very Shady Park!

On Tuesday, we went with some friends to another shady park on Thomas Road in Wellesley, MA. It is called Perrin Park, and it was shadier than the last park. We were there on a cool morning, so it was chilly! There was plenty of playground equipment, and a big field to run in too! The kids wanted to go back the next day!

Auditory vs Visual

Today while Frankie was at "school", we did a project in the parent group. It was called a "First, Then" board. We laminated paper, the first half has a "First", the second half has a "Then". At home, you could use this with your child and velcro on pictures. Under "first" you could have a picture of cleaning the toys, and under "then" a picture of having a snack. So the "first" is an unpreferred activity, and the "then" is the preferred activity. It sounds like a good idea to teach children to do certain things that they may not want to. And they can have warning about what is coming next.
When I was making it, I was thinking that is sounded like a good idea, but Frankie is quite good about doing something willingly before his preferred activity. The other mom in the group with a visually impaired child said she might want to get a bigger font for the words. It then dawned on me, that yes, the words were too small and that Frankie does not learn things easily visually! He is smart and most of the things he knows he has learned through listening. He is an auditory learner. This got me thinking about how there is so much learning that is taught visually, and I need to make sure Frankie gets to learn how he does best!

Dermatologist

Frankie went to the dermatologist back in July. I just wanted to get a baseline for his skin and any changes over the years. She said he looked good and we don't need to return for 5 years.
I got to ask her about sunblocks! She recommended these chemical free ones; Varicream 60, Neutrogena Sensitive Skin, Blue Lizard Sensetive Skin and California Baby.

Some recommended sites for sun protective clothing: Coolibar and Nozone.

New Baby Banz

Baby Banz sunglasses are now being made with clear lenses for children with special vision needs. The company is also making sunglasses for moms and dads too. Check them out!

One of the Shadiest Parks I've Been To

Frankie and I went to Warren Park in Wellesley this afternoon. We both loved it! There were huge trees shading mostly all of the park! I didn't even put his sunblock on. It was beautiful with so many old trees. He loved all the climbing structures. There was a large one with some tall slides. He was mostly on the smaller one, which had a variety of slides too. There were a few other climbing structures, swings, tire swings, a sand box and plenty of picnic tables.
I found it very enjoyable because it was so shady and there was a lot of room, so it didn't seem crowded.

Pre IEP Meeting

Last week, Frankie's EI teacher and TVI both came to the house together. I really liked it because we started discussing the IEP process and what is going to happen. I feel like I have more of a time line now. In the fall, we will start sending paperwork to the schools and then start the evaluations over the winter. I just feel better knowing more about what is going to happen!
Does anyone had good IEP do'es and don'ts?

Sunblock for George

Since Frankie needs sunblock mostly everyday, he is pretty used to getting it put on. But since he is 2, and exerting more independence each day, : ) he has days where he is very squirmy, moving, thrashing around! So today as I was putting it on, he happened to be holding his Curious George.
I pretended to put a little bit of sunblock in his hand and told him to rub it onto George so he was safe from the sun too. He loved doing it and asked for more and was occupied the whole time. We use this for other things like eating too, where he will feed George finger foods and then feed himself. But I was glad it worked well for sunblock, as well!

Growing Up

Lizzy left with my parents today to spend the week at their house. She has done this for the past 2 summers. She was so excited! I was a little concerned that Frankie would be quite upset to see her go. He was OK till they were pulling out of the driveway, then he said he wanted to go in the car. He has been asking for her and Ghee and Pa all day. I made him a photo album of all of them to look at in the morning.
So he is doing pretty well, but I miss her already. I know she will have a great time, have fun and get to do lots of cool stuff! But it is funny to tuck Frankie in at night and not her. I guess it's part of her growing up!!

Zoo Day

Today we went to Southwick's Zoo in Mendon, MA. The zoo is quite large and has many great animals; lions, tigers, elephants, lots of monkeys, camels. There is a deer forest where you can walk with the deer and feed them. There are elephant and camel rides, an elephant show, kiddie rides and a playground. It is a very shady zoo too! They are opening a sky ride in August. It is open and spacious, an all around great zoo!
Frankie had a lot of trouble on the playground equipment. He climbed up the stairs and then wanted to walk across the top to a slide, and he did it so slowly and cautiously. I have never seen him take so long to walk across something. He was holding on and looking down and moving his foot an inch at a time, testing to see if there was going to be a stair. A few times, he got down on all fours and felt around to see what things were like. There were small little holes in this structure, so maybe seeing down below was throwing him off. It threw me for a loop, watching him. He looked like he could really not see much at all. It was hard for me to watch. I was on the side reassuring him that there were no stairs there and he was doing fine. But it made me feel a little sad.
As much as we like zoo, and this one was great, Frankie does not really see 90% of the animals. He has fun, because he always does, but doesn't get excited about the animals. So it was a good day, but a few challenges along the way.

Hinkley Pond and Playground

We went to Hinkley Pond again today, in Medfield, MA. It is a man made swimming pond that is chlorinated and filtered, so it is clean, and warm too. It is very shallow for young children and there is a dock to jump off. Frankie loved walking on the dock, playing in the shallow water and digging in the sand. I realized he had not really played in the sand before. Lizzy loved jumping in the water and swimming like a fish.
The beach is great too because there are some big trees, so there is always shade! Frankie did a god deal of playing in the sand in the the shade! Very relaxing for me!
We have gone to swim twice, with my sister-in-law and the cousins! The kids all have a blast! There is a also a large playground, which we have been to many times. There is a sandbox there too, playhouses and large ride on cars and trucks. Overall, a great place to take the kids to swim, or just for a day in the park.

Reflections on Lizzy

It is amazing how fast time goes. Lizzy will be 7 in September and starting first grade! Some days I cannot believe how big and grown up she is. She helps around the house and is a great helper with Frankie, making sure he does not get into mischief around the house. She can jump in the deep end and swim all the way across the pool.
I was looking at pictures of when we went to Disney World when she was 3, and she looked sooo little, it was amazing. I'm sure I'll have more to say when she does turn 7, and starts first grade. But I will enjoy the summer in the meantime. : )

Reasons for an IEP

Frankie will be 2 1/2 in November and we will start the transition/IEP process. I want him to get an IEP for a number of reasons. I am just going to list them so I can remember them and refer back.

He has trouble pointing out things/animals etc. in books.
All animals are a sheep to him.
He has trouble with stairs.
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 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.
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, shuffle very slowly.

Frankie is doing really well, but I still think he would benefit from an IEP, at least in the beginning so he can get the best start, that he deserves.

Happy Rainy Day!

I was sitting her while Frankie had a snack and Lizzy is at her friend's house, and the gentle rain sounds so nice! It is relaxing and calming. Sometimes I think of it as a pain when it ruins outdoor plans, but of course I know all it's benefits. But it also is peaceful. I even like thunder storms. I like to stand by the front door and watch the driving rain and hear the thunder. My kids are getting more used to them. : )
So happy rain day!

Tired

Do you ever get so tired, you feel like you can sleep all day and night and still not have caught up? This week has been that way for me, today in particular! My whole body feels exhausted and sore and I feel like I could fall asleep all day long. I know it is my fibromyalgia flaring up, but wow, it makes it that much harder to be a mom. I do well most of the day, and then bathtime hits, and pow, I am ready for the day to be over. It seems monumental to give the kids a bath and read stories before bed! But I am plugging along and since it is 9:00, I think I should go to bed. : )
Things that were great today:
2 storytimes
getting new books
Frankie going to hug Lizzy goodnight
Thinking about Lizzy jumping in the deep end of the pool and swimming all the way across!

Uplifting article

From Boston Public Schools:

Blind student – gifted violinist and computer programmer – graduates from Boston Latin School
Musical prodigy Albano Berberi of Roslindale, a visually impaired Albanian immigrant, will enroll in Wheaton College next year

June 12, 2008

BOSTON - Albano Berberi, a visually impaired student, arrived in Boston from Greece in 2001, a sixth grade student who spoke no English and was unable to read and write in Braille. This month, he is graduating from Boston Latin School as an accomplished violinist who has excelled in rigorous Advanced Placement (AP) coursework.

Determined to pursue his love of music and computers, Albano, whose family had immigrated to Greece from Albania when he was a child, quickly learned English and Braille, with the help from new assistive technology designed specifically for students who are visually impaired. In 10th grade, just four years after arriving in the U.S., Albano scored “Proficient” on the MCAS English exam and “Advanced” in MCAS Mathematics.

Albano, who lives in Roslindale, completed his senior year at Boston Latin School with a full course load that included College English, AP Music, AP Computer Science, French 4 Honors, and Pre-Calculus. Throughout high school, he devoted himself to music composition and performance while exploring his interest in computers as an academic subject and a hobby.

In the fall, Albano will enter Wheaton College, where he will major in music performance and writing, with a minor in computer science.

Siblings

I was in my EI parent group today, while Frankie was at his class; and a mom was talking about her twins and asking about potty training one at a time. The facilitator of the class mentioned that she was also a twin and how close she is to here sister.
It just got me thinking about how close Lizzy and Frankie are. I am amazed some days by their love for one another. While she is away at school, or now camp, he asks for her many times. They almost always want to play together when we are at home. She said that it was so great to have Frankie around because then she always has a playdate that does not have to go home! During the school year, she went to the children's mass at church and on topic was about loving God more than anyone else. She said to me, "It is hard to love God more than Frankie". I was so touched and felt that summed up how she feels about him, and vice versa. I told her that loving Frankie was part of loving God, and that is was nice of her to love Frankie so much.
Every day now before his nap and before bed, he will go find her and say, "Night, Lizzy". It is precious. They are always hugging each other and feel bad if one gets hurt.
They do have times where they argue over a toy or something, but I feel so happy with the bond that they have! They enjoy each others company.

Cape Cod Children's Museum

While we were on Cape Cod, we went to the Cape Cod Children's Museum in Mashpee. This was our third trip there, over the past 3 summers. I think this is a great activity while on the Cape, and good to get out of the sun. The kids, of course, love it too! This year there was a new submarine to play in, pretend to drive, etc.
The museum is one large room, with lots to do! There is a train, kitchen area, art, post office, music room, book area, science toys puzzles, dress up, a climbing boat, mind bender puzzles and others I have forgotten. There is another separate room with special art projects with someone facilitating. On weekday mornings, there are other group activities such as; crafts, games, storytime and sing alongs. The museum has clean bathrooms, a changing/nursing area and a gift shop. At $6 per person over 1, it is a good deal too. I highly recommend this as a great "shade" activity while on Cape Cod.
Another great Cape activity that we enjoy is the Woods Hole Science Aquarium.

The Beach

We have braved the beach with Frankie a few times this summer, so far! I have always LOVED the beach and ocean. I went to Wildwood, NJ, as a kid, every summer with my family. The ocean, waves, sand, rides, salt air, fried fish, I love all of it! We started going to Falmouth, Cape Cod when lizzy was a baby and really enjoy that too. Since Frankie has been born the beach has been a bit more of a challenge. The sun bothers his eyes, and of course the thought of sunburn. But last weekend we went to Dennis, Cape Cod, and we went to the beach twice. We got there on Friday and went to the beach later in the afternoon, around 4:30. I think it was a much better time to go as far as the sun goes. I felt a little more relaxed that the sun was not as strong. Frankie still stayed under the umbrella, but had a great time and loved the sand. Lizzy, like me, loves everything about the beach! She loves to swim in the waves most of the time! We went another day and brought along a sun shade tent. Frankie enjoyed being in it and had snacks in there and dug in the sand. We didn't stay too long, but it was an enjoyable time!

New Eyes for the Needy

Our town has Monday night concerts in the summer, and there is usually some fundraising involved. This year people can bring their old glasses to donate to New Eyes for the Needy. These can be donated to people in other countries, or parts can be sold for money for new glasses. Monetary donations are also accepted. So next week I am definitely bringing my 2 old pairs of glasses!

New Info and Websites

Frankie's EI teacher gave me a site to look over for IEP information, the Federation for Children with Special Needs. There is a lot of great resources on it. Frankie will be 2 and 1/2 in November, so the IEP seems to be looming, and I am interested in researching more about it.

The SHADE foundation is once again this year, doing the Skating in the Shade program in Massachusetts. Children and parents can skate for free in the peak sun hours. Click here for schedule.

For some updates on us, Frankie had showed some interest in the potty; wanting to go when he gets changed, actually going on it a few times, asking about it. So we are taking it slow right now, but it is another sign of how he is growing so much!
We also don't change him on his changing table, because he figured out how to climb up on it after his nap, much to my shock! So we took the bar off that made it a changing table and now use the floor as a changing area. Without the bar, he could not pull himself up while climbing. He is such a little monkey. : )

Frankie's School

Starting at the beginning of June, Frankie's EI class is a drop off one. I stay for the first half hour, and then go to a parent group for the next hour and a half. He loves his "school". He gets a little upset sometimes when I leave, but is distracted as soon as I go. This morning when I mentioned he was going, he said, "Bye, bye, Mama"! He is getting so big!
The teacher says he does great and transitions well too. He knows the routine and will know what is coming next and what to do. Today they played in the water table with bubbles and painted cardboard firecrackers for the 4th.
It is exciting to see him doing so well. When I returned today, he was sitting their painting with his smock, too cute!
The parent group is a little long. It is not as informative for me as the Perkins group, because the moms have children with all different issues. So it is not specific to vision and albinism, as Perkins is. We talk about more general parenting issues.
It is fun to see him going to school, but a little sad that he is big enough to go to school!

Perkins Albinism Class

I have written some about the class at Perkins, but wanted to mention all the rest of the great things we did and learned. On the last day of class, (everyone was sad to see it end!), we did a sunblock experiment. We put sunblock in between transparent paper. We then went into a dark room and put photo paper under the transparent paper. We then went into the sun for a few minutes and came back inside to lift off the transparent paper with sunblock. You could see how much the sunblock protected, because the paper was not exposed. I used the Aveeno Baby sunblock and it protected quite well, judging from the experiment. I have been using it all season and it works great and does not irritate the skin.
We also got to test out some of the low vision aids. We got to try hand held magnifiers and ones mounted on glasses. I am going to call this week to the low vision clinic at Perkins to get an appointment for Frankie. That will be quite interesting to me.
There is also a workshop at Perkins where all kinds of devices are made to help blind and vision impaired children. The slant boards were very nice, it is a desk that is slanted at a 45 degree angle so the child does not have to strain their neck over so much to look at or read something. It is made from a type of cardboard, so it is lightweight too.
Overall, I do love the albinism class!

Summer Fun!

I have many posts about vision, EI, etc, but I wanted to blog about all the fun summer activities first! Today we went strawberry picking at Ward's Berry Farm, so much fun with the kids. We got to take the hayride out to the patch, just "a ride" to Frankie. : ) They each picked a pail of strawberries, and not too many were eaten up right then! I was noticing that Frankie did have some trouble finding the strawberries with his eyes. He would feel for them and not even bother to look sometimes. Tonight I may make some sort of strawberry parfait with vanilla pudding and bananas.
Last weekend we were in New Hampshire, at Storyland and Santa's Village. Both parks were great! They are quite shady, which was great for us, mainly geared towards kids 2-10. There are many themed kiddie and bigger rides, animals, storybook houses, Santa (at Santa's Village). We also stayed at a hotel with an indoor water park. This is our 3rd indoor water park and we love them! No need to even worry about the sun. When we are home, we joined our high school indoor pool, cheap and shaded!
Things that made me happy today:
Strawberries
Chatting with the kids on the hayride
A night walk
Finally blogging : )

20/60

I have been slow to post lately, sorry!
Let's see, Frankie had an opthamologist appointment 2 weeks ago. I seem to get more confused each time I go. The good news is that he improved on the teller cards to 20/60! We were happy about that!
At his last appointment, I thought that he would get glasses eventually when the degree of his eye turning was the same for 2 appointments in a row. Now that was not true, he does not need glasses. So I find it a bit frustrating to understand something one way and then it is different the next time. So surgery would be the only solution for his crossed eye, but not right now. I am hoping to try to ask even more questions next time, to be clearer in my understanding.

Happy Father's Day!

Happy Father's Day to all dads! You are special. Lizzy and Frankie have a special bond with "Daddy" and do different activities with him than they would with me, which is nice. Lizzy loves to talk about space with Daddy and Frankie loves to go play downstairs with him.
Today we got to go to the car museum to celebrate Father's Day.
Things that were happy today:
Making pancakes
Calling my Dad (Pa to the kids)
Seeing John's Dad (Grandpa to the kids)
Going to the car museum and hearing Frankie repeat, "Car!"
Chai
Thinking about Lizzy's ballet recital yesterday and her Frosty the Snowman costume.

Thank you, Rick!

I did get to see Rick Guidotti last week at Perkins. So inspiring how he goes around the world promoting difference as beautiful!

Thank you Rick for seeing the beauty in everyone! For being so full of energy, enthusiasm and
kindness. Your warmth and love towards others is apparent immediately and lights up a room. As soon as we saw you last week, you immediately remembered us and talked to Frankie. We need more people in the world like you and working as hard as you do to promote goodness and harmony among so many different people. Thank you!

Celebrating Difference

Rick Guidotti, of Positive Exposure, received a humanitarian award on Thursday, May 15th, 2008, In NYC. My parents had the pleasure of going last night and meeting Rick for the first time. He is such a wonderful, caring person, who does such good for others. He is an inspiration and a fun person to meet. He is so full of energy! Of course, they were excited to meet him and my mom called me first thing this morning. He remembered meeting Frankie and Lizzy last year at Perkins and has some great pictures he took of them.
My parents met some other wonderful people who had children with albinism, or who had it themselves. My mom has emails from all of them to give to me, so I can chat with them and ask any questions. She expressed how nice everyone was and how welcoming!
I am really excited to see Rick again at Perkins in a few weeks!

Happy Mother's Day!

Happy Mother's Day to all the wonderful, dedicated mothers I know. I got to have my mom, grandma and aunt up for the weekend for Frankie's party and Mother's Day. It was a great weekend. My mom even dressed up as Curious George for Frankie's party and my dad as the man with the yellow hat!
Things that made me happy this weekend:
Mom (Ghee to the kids)
Frankie's party
Family
John's mom (Nana to the kids)
Nice weather
George Cake
Lizzy's homemade gifts
Thinking about my pedicure

Aquarium

Last Sunday, Frankie's birthday, we took him to the New England Aquarium. He and Lizzy had a great time. We got there early and it was not too crowded, he was able to run from tank to tank pointing out the "fishies". He also liked the "jellies". Lizzy had a stuffed frog that she brought home from school for the weekend, so we had fun taking pictures of him at the aquarium. She wrote about his adventures later.
This aquarium has a large 3 story tank in the middle with small exibits on the sides. It has a variety of marine life and a number of talks and feedings. We enjoy the penguins and sea turtles a lot. I recommend getting a pass from the local library which cuts the price down a lot.
I realized that fish in an aquarium are much easier to see than animals at the zoo. So we will have to rethink all our zoo trips as Frankie gets older.

Happy Birthday Frankie!!

Frankie is 2 today! I can't believe how fast time goes, even quicker with the second child. Lizzy and I were thinking about how we had a picnic the day Frankie was born, before my water broke in her nursery school parking lot. : ) The next day Lizzy got to come to the hospital to meet him. She came to see me in my room and then we all walked down to the nursery to get him. He was in the small crib, and she was so happy to meet him! She was jumping and saying, "Frankie". The next year on Mother's Day she drew a picture of me and her meeting Frankie for the first time. : )
Frankie is such a happy child and easy going. He is a blessing to have in our lives. It is so much fun to hear him talking and he likes to laugh a lot too.
He enjoyed his trip to the aquarium today, dinner at a favorite restaurant and ice cream cake. He got a play grill that makes grilling noises that he loves. And Lizzy got him 2 cars books and musical keys. We also got to all go to church together, this evening. Frankie did so well and was quiet, doing his stickers diligently.
What a fun 2nd birthday! Happy birthday Frankie!

Walk of FAME

Today's post doesn't focus quite so much on the kids, but on me. We had a busy day today; little league parade, little league practice, a baby shower, birthday party, errands, etc, plus fitting in Frankie's nap and wrapping his presents for his birthday tomorrow! : )
So now I am feeling very tired, worn out, and a little crabby, not to mention my headache. When too much is going on or there is a lot of stress, my body reacts negatively. For a while I thought it was just normal stress, but after Lizzy was born, I started experiencing fatigue every day, pains in my legs and terrible headaches. I was finally, after many months diagnosed with fibromyalgia. The National Fibromyalgia Association describes it: "Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances.
I go through good periods and others where it flares up, sometimes for no reason. Today just got me to thinking about it and I also registered to support the NFA's first annual Walk of FAME, being held in CA on May 10, 2008. Today also reminded me that is it OK to take breaks for myself and make sure I get enough exercise, rest, etc.
I am excited about tomorrow, Frankie's birthday and our trip to the aquarium!

Watching "Georgie"

Frankie LOVES Curious George, or, as he says, "Georgie". And he has just started watching him on TV, he says, "Georgie TV".
When Lizzy has watched TV in the past, Frankie was usually not interested at all. He could not see it from the couch and even if he got closer, he was not interested. Lately, making dinner was becoming more of a challenge; he would be crying in the kitchen, under my feet, wanting me to pick him up. So I got to thinking that maybe seeing and hearing George on the TV would do the trick! So about a week ago, I put his chair close to the TV and told him he and Lizzy were going to see "Georgie"! He was excited, yelling "Georgie" and really likes to sit there are watch it. It gives me a half hour to make dinner and relax a bit. : )
I don't want him to become a "chair potato", but it is nice to have a little "mom break". He and Lizzy enjoy talking about George while they are watching too.

Gene Therapy

One of the things that was brought up at the Albinism group today was gene therapy. I had also read an article on it a few days ago.
From http://news.yahoo.com:

"The two teams of scientists, working separately, each tested gene replacement therapy in three patients with a form of a rare hereditary eye disease called Leber's congenital amaurosis. There's no treatment for the disease, which appears early in infancy and causes severe vision loss, especially at night."

Vision was improved with the gene therapy and there may eventually be therapies for other genetic eye conditions. Next week's group is going to be with a geneticist, so maybe there will be more insight on this.

Albinism Group!!

Today was the first day of the albinism group that we will go to for the next 7 weeks at Perkins School for the Blind. I am so excited about it. We went last year and loved it!! Today myself, 4 other moms and dads and the facilitator talked and got to know one and other and each others children. It is always nice to meet others in the same situation. Everyone had older children, 2 of the parents had an older child with albinism, which is a nice perspective to have. I am looking forward to the coming weeks and all the great speakers that are coming.
Frankie did pretty well separating. He was upset at first, but his TVI and another lady distracted him with some fun gross motor activities. He then had so much fun he didn't even want to stop for snack! : )

Bye, Bye, "Ting-Man"

Frankie seems to have given up his pacifier! He will be 2 next Sunday and he has had 2 naps and 2 nights without it. John and I got to go to Las Vegas, for his brother's wedding!, and my parents watched the kids. My mom said the "ting-man" was gone and gave him his Curious George, and he went to sleep!! He has asked for it, but still goes to sleep without it, it is quite exciting.
I know, "ting-man" is a different name for a pacifier. Frankie's godmother and my dear friend is Vietnamese, and pacifier in Vietnamese is "ting-ting". So we have called it that and then I started calling Frankie the ting-man and then he began to call his pacifier "ting-man". It is pretty funny when he says,"I want ting-man.".
So he seems to be growing up by leaps and bounds. This is big to give up "ting-man"! He got his second hair cut today and was so brave and was even smiling. He did really well while we were away and had fun the whole time. We are going to move him into his big boy toddler bed for his birthday, but now I may need to wait, he's growing so fast!
Bye, bye, "ting-man".

Fun Day

Today was our annual trip to Boston for a swan boat ride, seeing tulips, ducklings and lunch! It was a beautiful day and the kids enjoyed the time with their cousins.
Frankie was sunblocked up and did fine. I always get a little nervous at the start of the sun season.
Today I am happy for;
Swan Boats
Boston
Sunblock
Veggie roll ups
Slides
Flip flops
Family

How Many Years in between Children?

My children are almost 5 years apart, Lizzy was born in September 2001 and Frankie in May 2006. That is a bigger span than most of my friends. It seems that the norm is more like 2-3 years in between.
I enjoy watching Lizzy take care of Frankie like a little mother and look out for him. Lately she has been reading to him each morning and he will bring her a book and say, "Lizzy, read". She will entertain him for me while I am making dinner or bring his his favorite toy if he falls down and is crying. I think because of the span in ages, she wants to take care of him.
So I am thankful for the way my children are, the years in between and;
Lizzy teaching Frankie
Frankie asking Lizzy to help him with things

A Vivid Imagination

Where does our depth of imagination come from? What helps it to develop?
When we were at Lizzy's parent/teacher conference the other night, her teacher said she has the most vivid imagination she has ever seen in all her years teaching!! I know she loves to imagine and pretend. From a young age, she could entertain herself with making up stories and acting them out with dolls, stuffed animals, etc. She will sit with 2 dolls and make them talk to each other for a long time. She enjoys making up stories, and playing make believe. She has been into leprechauns lately. It was interesting to listen to her teacher and say to myself, "that's Lizzy". : ) She loves reading and listening to stories we read, maybe that has something to do with it.
I wonder how much of an imagination Frankie will have?

New Shoes

We went spring shoe shopping a few weeks ago for the kids. Yesterday was warm enough for Frankie to wear his new Cars sandals. He was SOOO excited! We took a walk last night and he was sitting in his carriage and he talked about his shoes the whole time; "new shoes", "cars", "piggies out", "light up?", "new shoes", "cars" . . . you get the idea. He was asking if they light up because his sneakers with a firetruck do. He wondered why these didn't, as well.
It was just fun to witness his excitement. Lizzy and I laughed while we walked, listening to how happy he was. Today he was just as excited to put them on again!

It just reminded me of happiness and remembering to be happy with little joys in life. A few joys in my life today;
warm sunshine
Frankie "mowing the lawn"
Listening to Lizzy read to Frankie
Getting appetizers with John
Wearing spring clothes

"Slide"

Frankie and I were early for story time on Friday, so we walked towards the nearby elementary school. We were about a baseball field away from the playground area, and Frankie started yelling, "Slide, slide", very excitedly. I was quite surprised because of how far away we were and I really didn't think he would be able to see the slide from that distance. So now I am debating whether he saw it clearly, not so clearly, or remember the slide was there from another time? I didn't remember being there recently, but he would probably remember better than I. : ) I just found this interesting.
He also points out all the buses. Again, does he see them every time, or maybe hear them? He knows where they are parked, so maybe he just remembers? Or maybe he sees the yellow and associates bus? I guess someday soon I will know, he is starting to talk up a storm!

Things to be Happy About

I thought once in a while, I would write down the things that make me happy and I am thankful for that day! Here are today's:

The warm weather
Walking with Frankie to Starbuck's
Tall nonfat chai tea latte
Talking with friends while the children played outside
Talking on the phone to my mom
Looking forward to our trip to Las Vegas
Sitting on the front porch with Lizzy, talking, laughing and enjoying the sun on our toes
Pancakes for dinner
Bookclub
Talking to John over chips and salsa

"Blueberry Eyes"

When Lizzy had her strabismus surgery, 2 years ago today, we read her a book called "Blueberry Eyes" beforehand. It talked about a girl whose eyes crossed, wore glasses, a patch and eventually had to have eye muscle surgery. Her family calls her "blueberry eyes" because they are as blue as Maine blueberries. The book talked about her family and things she liked to do. I liked the surgery part, because it showed the hospital and the nurses and doctors. It made things seem not too scary. I thought it was a great pre-surgery book because it was real and accurate, probably for kids 3 and over.
When I was looking for the book online tonight, I found another, "The Patch", about a girl who is a ballerina and needs to get a patch, looks cute! Speaking of patching, the Eye Patch Club is a great resource for kids who need to patch. When Lizzy was being patched, we joined the club and got a newsletter, a calendar with stickers to mark off days patched, online resources and games and puzzles for kids. She enjoyed getting the stuff in the mail and putting the stickers on the calendar with Patch the dog.

Weekend!

We had a busy weekend! Lizzy finished up her swimming lessons, complete with jumping into the deep end and swimming to the side, I'm impressed! Today we brought Frankie to church for the first time. We usually go to different masses, so one of us stays home with him. He did pretty well to start, but then got a little louder. So he and John hung out in the "crying room", and then I left with him early. So we will keep trying. We brought a snack, water, coloring and stickers, but I think we need to bring a few more new items next time. : ) I'll be on the lookout, maybe the party store.
We also had an egg hunt today and live animals with our newcomers club. The egg hunt was fun, despite the cold, damp weather. Frankie found his first egg and said "more, pees"(please). : ) Then we went in for the animals. The kids were sitting in a circle, I held Frankie behind the circle and the man held up the first animal. I was pointing to it, but he could not see it! Sometimes I even forget how close he needs to be to see something. So we didn't last long and went upstairs to play with toys instead. He didn't mind, but it just got me thinking ahead again! These same animals will probably come to his elementary school in a few years and he will have trouble seeing them! I'm sure the teacher will do her best to sit him in the front, but it still could be a challenge. Sometimes I find it hard to not know how he will do in school and what will give him difficulties. I'm sure a lot of parents feel this way anyway.

The SHADE Foundation

I came across news of the SHADE Foundation of America last spring/summer. It was started by Shonda Schilling in August 2002, after she successfully battled melanoma. From the website:

"Dedicated to eradicating melanoma through the education of children and the community in the prevention and detection of skin cancer and the promotion of sun safety."

Last summer there was a great program in the Boston area; Skating in the SHADE. Children could skate for a hour or so in late morning/early afternoon, when the sun is at it's most intense. I hope they repeat this activity again!

The website is full of great sun resources and events, as well!

Positive Exposure

I am getting excited because in about 4 weeks, Frankie and I are going to start an albinism group at Perkins School for the Blind. It meets for 6 Wednesday mornings, last year I loved it! The children are cared for downstairs by wonderful teachers and the parents get to meet upstairs; chat, listen to speakers, ask questions, etc.
One of the speakers who came last year was Rick Guidotti of Positive Exposure. He travels around the world photographing people with differences and showing their beauty. He is an advocate for people with so many different genetic conditions, one of which is albinism. He showed us videos from all over the world of people with albinism. It was so interesting and he is just the kindest person, so funny too. : )
I hope Rick comes again to this year's albinism group! He is receiving a humanitarian award in NYC on May 15, 2008. My parents plan to attend, so I will report back.

Jon and Kate Plus 8

Does anyone watch "Jon and Kate Plus 8"?
The Gosselin Family; Jon, Kate, their 7 year old twins and 3 year old sextuplets, have their life chronicled through a weekly TV show. It is funny, poignant, and parents can relate to many of the events that go on!! Since they have 8 children, the last episodes have been devoted to taking each child out individually. They each got to pick somewhere they they wanted to go with mom and dad.
It reminded me of how important it is to spend one on one time with our kids. I do get to spend one on one time with Frankie, since Lizzy is in Kindergarten until 2:00 each day. Spending time with her alone is harder. We now have Friday night game night or TV night, where she stays up an hour later to spend time with me, or me and Dad! She has short Wednesdays every other Wednesday, so we try to have his nap as soon as she gets home, so we can have lunch and play, do crafts together. On the weekends, as well, John or I try to take her out alone at some point.

Deer with Albinism

I got an email today with pictures of twin deer with albinism. So beautiful, like people with albinism! : ) I did a search and found them again on this Texas hunting and fishing site.

"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.

Lizzy's Eye Appointment

Lizzy had an eye doctor appointment yesterday. She has worn glasses since she was 3 (she is now 6) to correct near sightedness. When she was 3 her eye started to cross outward. Her vision in one eye was about 20/40, while the other was 20/500! (amblyopia). So she wore glasses and then we patched her good eye to make the bad one stronger. We patched most of the day for close to a year and her "bad" eye improved a lot. She still was not using both eyes together (strabismus) and underwent eye muscle surgery. This also helped and she now uses both eyes together and is not cross-eyed.
This past summer, her worse eye slipped to 20/40, so we began patching again. At this last appointment, her eyes were pretty much equal. So we can stop patching for now!
Lizzy loves going to the eye doctor. Dr. Reese is one of the kindest doctors I know. He is never in a rush and answers all your questions. He talks to Lizzy while he is examining her eyes and makes her feel so comfortable. She does not like getting eye drops in her eyes, so he first put them on her hands for her to see them. Now every time we go, even if she does not need drops, she asks for them on her hands. He patiently gives her a variety of colors! They would both still be there if I did not tell her it was time to go!

Pudding and Play-Doh

On Tuesday afternoon, Frankie's EI teacher and her student teacher came, along with the student teacher's supervisor. It was a bit late in the afternoon, 4:15, but Frankie did well for the first part. We started with a snack, by 4:15 he needs some extra energy! She was practicing dipping and biting with Frankie, instead of stuffing the whole cookie in. He got to dip in pudding. : ) He was hungry and ate for a while. He did some signs; more, me, and said me and cookie.
Next came Play-Doh and animals. He has not played with it too much yet, so it's an extra special treat! He was using a lot of language with the student teacher while he played; ball, roll, cow, moo, yes, no, horse . . .
Frankie then played with her on the floor a bit, with tools and bees. But he was getting tired and ready for dinner, it was almost 5:00, so he began to melt-down. But overall I think it was a success. I like that he can play and respond well to a variety of people.

"Talking"

Frankie is starting to talk more and more! His big sister, Lizzy, was talking in complete sentences by now, (21 months), but he still uses single words. Some are real words and some are word approximations. I had been a bit worried because he doesn't talk that much, but he is getting better and is more apt to imitate us and try new words. At his last EI session, he said 22 words or word approximations in a half hour! I thought that was pretty good.
He tends to put G's in front of words in place of the correct sound, such as; "gook" for book or "gead" for read. His EI teacher said it is common for kids to put a different sound at the beginning of a word, but not the G sound. That is a harder one, so it's funny he uses the G.
He has a few new favorite words, one is "doggie". He has always wanted to pet dogs, but recently he has started saying "doggie" too. We were visiting my grandmother and he was petting, feeding the dog and saying "doggie", it was fun. He also loves to say "apple", just starting this weekend. I asked him if he wanted apple yogurt and he said "apple". After he was done, he said "apple" again and I realized he wanted a piece of fruit.
It is just fun to watch him learn to say new words and be excited that he can say them. He likes that we understand and he gets what he is asking for!

Vision Update

It seems like a while since I last posted and now I have so much to blog about!
Frankie went to the eye doctor on Thursday, February 21. He first sees Dr. Sokol, an optometrist, who specializes in Visual Electrophysiology. On Thursday he started with the teller cards, large rectangular cards that he puts in front of Frankie. On one end are lines, and the other end is blank. The easier ones have the lines far apart and the harder ones (closer to 20/20) and very close together. Frankie in the past has just looked at the lines. This time he was pointing to the lines when he saw them and got all the way down to close to 20/60!! Six months ago, he was 20/90, and now he is in between 20/90 and 20/60, so improving! At other visits, Dr. Sokol has then hooked Frankie up with electrodes to a machine that can measure his vision, as well. He did not do that at this visit.
Frankie's TVI also came to this appointment, which was great for me because she could voice concerns, ask questions and explain information that I was confused about. Frankie was also excited to see her and happy to play with her while waiting for the doctors.
Next, Frankie saw Dr. Strominger, a neuro-opthamologist. He examined Frankie's eyes and used a lot of fashlights, Frankie did very well! He confirmed what I had been seeing, that Frankie's right eye does cross inward. He is going to measure it each time we go in, we go back in June. When the measurements are the same, then Frankie will get glasses. If the glasses do not correct the problem, surgery will be needed.
I think Frankie will look cute in glasses, but I fear trying to keep them on him all the time. He does pretty well with sunglasses, but they are not on all the time. If anyone has great tips, they would be appreciated!
The surgery part is scary for my. My daughter, Lizzy, did have eye muscle surgery, as well, 2 years ago. She is doing quite well now. So I will know what to expect, but it will still be nerve wrecking! With her I was nervous leading up to it, I did OK during and I felt the worse after. All the emotions seemed to come out after it was over. I also felt bad because she couldn't go outside and play, because sand or dirt might get in it. That will be an issue for Frankie too. But we will just take it as it comes and be glad now that his vision improved!

Bowl-A-Thon 2008

Today we participated in our second NOAH bowl-a-thon! We went to one last year and decided to organize our own this year, it was a lot of fun. I want to start by thanking everyone who was able to come bowl with us. It was great to have so many family and friends with us and supporting us. Thank you to everyone who donated to NOAH also. It means a lot to us.
Frankie was sick, double ear infections, so he was not able to come to the bowl-a-thon, so he stayed home with Daddy. He did do a little bowling downstairs with his kiddie bowling set. I got a picture of him tonight with the pins, ball, and 2 golf clubs! : ) I plan to send NOAH a group photo from the bowl-a-thon and Frankie at his own bowl/golf-a-thon!!
We had about 40 people bowling today, lots of kids too. We all then had pizza and cupcakes made by Lizzy.
It was also great to meet a few new people. A man with albinism and his fiance, and another lady who's daughter has albinism. I find it so great and comforting to meet other people who are connected to albinism. They were so nice!
Again, thank you to everyone who participated and donated!! We couldn't have done it without you!

"All Children Have Different Eyes" Book

My husband and I gave Frankie and Lizzy books for Valentine's Day, and one was called "All Children Have Different Eyes, Learn to play and make friends", by; Edie A. Glaser and Maria Burgio, Ph.D. They enjoyed listening too it and I think it is a great book for children, talking about a variety of visual impairments.
The main character in the first chapter has nystagmus, or "Jell-O eyes". It explains how he needs to sit close to the board in school and he explains to other kids why he needs to do things a certain way. The next chapter talks about different visual problems, such as albinism, cataracts and color blindness. Lizzy was excited to see the girl with albinism.
The last chapter is devoted to a girl who has strabismus, a lazy eye, which is what Lizzy has. The girl in the story wears a patch, so that was cool for her to see. She also explains about her eye condition to her friends. I thought it was a great book because it touched on many different eye conditions and showed ways to talk to others about eyesight. In the back are activities to help with social competency, which can be difficult for children with low vision. The pictures were fun and bright too!

Happy Valentine's Day!

Valentine's Day seems like a good day to reflect on loved ones, those family and friends who help us through hard times. So thank you to all my wonderful family and friends, I love you!
Today was an exciting day for Lizzy and Frankie; cookies, candy, cards, presents, books (one of which will be discussed in my next blog). Poor Frankie was sick, but still enjoyed his sprinkled sugar cookie!
On another note, my grandfather passed away today, he is the first grandparent I have lost. He was 88 years old. I know how lucky I have been to have all of my grandparents around for so long, but it is still hard. I feel sad for my dad, who lost his dad.

Looking ahead . . .

I have been thinking about school for Frankie a lot lately. I registered him for his EI class today and he is in the same age group he was last time with the same teacher in the same room. For the next session in June, he will be ready for "Two Time", in which he goes by himself and I go to a parent group. He is not good at separating from me (unless it's family), so I think it will be hard. I am happy, though, that he can be in the same classroom he is now. He knows the layout and where his favorite toys are. I can imagine him in a new room without me would be very hard. It has taken him a while to explore this whole room with me there.
I know as he gets older, he will be in unfamiliar rooms, but I want his first experience away from me to be as positive as possible. If he knows where his favorite toys are, that will help! I think positive first experiences lead to other positive experiences down the road. And it is also helpful for me to think about his TVI coming into his classroom as he starts school to guide him and his teachers.

Kids Fun Stop

Frankie and I went to Kids Fun Stop today, his 3rd visit. It is an indoor playground, complete with slides, climbing structures, cars, trikes, a large fire engine, a play house, dolls, sand table, a mini carousel, crafts and plenty of room to move!! He does really well on the structures, they are all perfectly sized for toddlers. Things are spaced appropriately with ample room in between. There is an area that Frankie has not ventured to, but he loves the slide, cars and house. There is even a Curious George by the house!
There is an area that is fenced off, but in view, for babies under 1, I believe. And a snack room, as well. We are usually so busy, we do not even stop to snack. They have birthday parties and mommy and me classes, also.
Overall, Frankie and I enjoy it here. I think it is a place that vision impaired children can get around in pretty well. It has been pretty crowded, but he still does quite well. I think the size of it is key to him having enough room. I usually stay in one spot, so he knows were to look for me.

Hadley School

From the time Frankie was first diagnosed with albinism, my family and I have tried to find as much information as we can. NOAH was one of the first websites we found and has been great in connecting us with others and providing us with information. I keep adding to the "Resources" sidebar, and they really are great resources. I want to take time to cover each one and what is important about it, how it has helped me, etc.
The Hadley School for the Blind will be my focus tonight. It provides online leaning to blind and visually impaired people, their families and teachers of the visually impaired. I have been interested in the early childhood and elementary courses for families. "Learning through Play" looks like a great one! It offers suggestions to parents about teaching your visually impaired child, through play and the world around them. They offer classes in braille, as well, which I would like to learn, maybe if Frankie needs to learn it in the future. The courses in O and M (orientation and mobility) provide ideas on how best to structure your home for a visually impaired child. The 3 social skills classes help with special concerns that vision impaired kids face socially. I have not gotten to take a class with them yet, but will write about it when I do.

"Jump, Jump went the Little Green Frog"

Frankie and I went back to "Books and Babies" storytime at the library today. We go their early so that we could get a good seat. Frankie got a mat to sit on, and we put it close up in the front near the storyboard, where the librarian sits. I wanted to ask her ahead of time what the story was about so I could bring a prop, but did not get a chance this week!
Frankie did much better than last time. Sitting close helped him to look in that direction and see a little more of it, I think. He even got up to jump a little to "Jump, Jump went the Little Green Frog". Overall it was a much better experience than last time and we made it to the end to get a sticker!!

Explore and More

Frankie had his Toddler Time class today, "Explore and More". It is for children from 15 - 24 months old. There are usually about 8 children in the class with 3 teachers. Today his EI specialist who comes to our house was in the classroom too, so that was an extra treat!
It is quite structured and Frankie does so well! There is free choice play for the first 45 minutes or so. Frankie likes to stay near the kitchen set and "cook". He will go to the table toys and sometimes coloring. He really has fun, though. Next is clean up, which he loves, and then off to the sensory table. Today it was filled with potato flakes. He, and I, like when it is filled with hard pasta and rice. He enjoys scooping, burying and dumping.
Then we sing "bye bye" to the table and each child gets a mat to sit on for circle time. I think this mat is a great idea and Frankie loves to stay on his. We sing hello to all the children and then each child gets a turn to pick a song by signing "me" (putting your hand on your chest). Frankie was signing and saying "me" today. I was so excited that he was saying it! When it was his turn, he got to pick between the 2 sheets and he picked "If You're Happy and You Know It". After we have sang all the songs, the children put away their mats and have snack at the table. They wash their hands and sign/say "me", which Frankie did both. Today then had blueberries (a favorite), animal crackers and pudding. When they are done they have to clean up and put their bowl and cup in the center bin.
Gross motor is next and Frankie spent all his time on the slide. He did good climbing up, going down on his bottom and waiting his turn. Next comes an art project and the children colored a football and put stickers on it (another favorite). Then comes parachute, he was a bit tired at this point today, and then we sing goodbye. It is a fun-filled morning and he is just progressing so much, it is fun to watch!

Toys, Toys and More Toys!!

We have a lot of toys in our house! Having two children, a boy and a girl, we have an abundance. There are some in particular that I think are great for vision impaired children. I hope to offer some advice, toys that we enjoy and places to buy great toys and books.

ToysRUs puts out a catalog for differently-abled kids. We have some great ones under the auditory category. The Fridge Phonics Magnetic Letter Set is great and Frankie loves to play with it while I make dinner. Each letter clicks into the main part and then when pressed tells the letter and the sound it makes. Another button on the bottom plays "ABC's". The Shake 'N Go cars are also great and easy to use. Frankie also loves play phones in general.

Frankie's TVI has brought us some great toys from The American Printing House for the Blind. There are 2 under the early childhood products that we have. The textured pegs are wonderful for visually impaired children. The base is blue and the pegs are bright yellow, easier to see the difference. The pegs are also textured to be picked up easier and held correctly. The other one that we have is the sensory cylinder set. There are 6 cylinders of various weights and textures.

I also sell Discovery Toys and have purchased a lot of great toys and books. From their website:
"Children with visual challenges may need special assistance in developing:
Tactile and auditory senses.
• Products which present sound and sensory variations.
BUSY BATH, BUZZY BUDDY, EARLY TWIRLY, ELEPHANT FUN TEETHER, FLUTTER FUN TEETHER, JANGLES, ROLL-A-RAMA, RAINFALL RATTLE, SONIC SIGHT, and TUB TUNES WATER DRUM.
• Toys that have interesting surfaces, textures and smells to explore.
BUZZY BUDDY, CURLY & PALS, ELEPHANT FUN TEETHER, FLUTTER FUN TEETHER, HIDE INSIDE Surprise, JANGLES, ROLL-A-RAMA, SHINY touchy SMELLY, SUPER YUMMY, and TANGIBALL.
• Sand and water toys.
BIG RED SHOVEL, BUSY BATH, and FIRE HOSE HERO Set.
Body movement, balance and coordination.
• Toys that move or handle easily may motivate movement.
6 in 1 PLAY CENTER, GET UP & STOMP!, GO GO CATERPILLAR, IT’S ALL IN THE RHYTHM!, JUMP TO THE BEAT!, LIGHT-UP LADYBUG, RALLY ROCKER, RIDE2ROLL™ SCOOTER, WEEHICLES™, and ZIP TRACK™ RALLY.
Language stimulation.
• CD’s can be excellent for language stimulation starting with slower-paced songs and lyrics based on more familiar concepts.
ABC SOUND BINGO, SOUND BINGO, SOUNDS LIKE FUN CD, and All DO RE ME & YOU® Book & CD selections.
• Books with large pictures and larger print may also be helpful.
1,2,3 OCTOPUS & ME, AHOY, PIRATE PETE, Baby Signs®, BUILD A BOOK, HEAD, SHOULDERS, KNEES AND TOES, MOO-RIEL and FRIENDS, Once Upon a time, PUT YOUR LEFT PAW IN!, SHINY touchy SMELLY, WIGGLE WAGGLE Loop-de-Loo!, ZANE THE TRAIN.
• Books with rhyming or poetry.
1,2,3 OCTOPUS & ME, COWBOY BABY, MOO-RIEL and FRIENDS, PUT YOUR LEFT PAW IN!, RUPERT THE WRONG-WORD PIRATE, WIGGLE WAGGLE Loop-de-Loo!, ZANE THE TRAIN.
Choose toys and games with:
a) sizable pieces
b) large, clear pictures
c) good contrast of light and dark images
d) non-glare surfaces (note: clear contact paper over game boards reduces glare)
e) concrete methods for teaching developmental concepts
ART FORMS, BUSY BUGS, CASTLE MARBLEWORKS®, COUNTDOWN RACER, CURIOSITY CUBES, DROP ‘N POP™ SHAPE SORTER, GEOVILLE™, GIANT PEGBOARD™, KLACKEROO,
Roll & Play, SUNSHINE MARKET, and WHAT’S GNU?™.
* CASTLE MARBLEWORKS® has balls with a jingle bell inside so a child can track the ball by sight and sound."
These can all be found in the Discovery Toys online catalog! Frankie loves the Water Drum, Shiny, Touch, Smelly, Tangiball, Go, Go, Caterpillar, Weehicles, Moo-Riel and Freinds, Baby Signs, Castle Marbleworks, and Sunshine Market.

Just a few more of my suggestions:
Touch and feel books -
Usborne Books: A few favorites: That's not my dinosaur, That's not my pirate
High contrast books -
White On Black by Tana Hoban
and Black On White by Tana Hoban