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

Banks, Trains and Stretchie

Yesterday Frankie had a visit form his EI specialist. She comes once a week to our house to work with him, which he really loves! She has been working for a while, using a toy bank with Frankie. He has learned to match up the same color money to the part where it goes in. And then watches as it disappears and comes back out, teaching cause and effect.
His favorite part comes next, he gets to play with trains. We sing a train song, one that is also sung as his EI class on Wednesdays. He then gets to put the trains together and apart, build them and put people and animals in them. We sing "Old McDonald" to introduce different animals, his favorite being the "ba ba" (sheep). Then they all go to sleep and we sing "Twinkle, Twinkle, Little Star" and then read a book.
She brings a circle rope type toy called "stretchie". Frankie gets to hold it while singing songs and moving it in different directions. He also gets to play with balls, playdough, crayons, cars on different days. He loves singing more songs to practice talking, as well.

Beads, Books and Textures

Frankie had his monthly session with his TVI today. She brought some great new toys that he really enjoyed! The first was blocks to string. First she practiced stacking the blocks with Frankie and he stacked about 3, which is a new skill for him! Then she helped him sting them on a string and he worked at that for a while putting them on and taking them off. She introduced some circle and oval stringing beads, as well. It was great for his hand/eye coordination, something he needs to work at a lot because of his vision.
She also brought a pop up book. We had done some already, but he really enjoyed this one because it was about farm animals. He was saying some of the animal noises and really got into exploring each animal. He loves books where he can touch something, touch and feel books are great!
Lastly Frankie got to play with texture toys shaped like cans. They had a texture on one side of the "can" and varieties of bumps on the other. They also were different weights to teach heavy and light. We got to keep them and the stringing blocks, so we will be busy for the next month! In February, Frankie's TVI is going to come to his eye doctor's appointment.

Update on My Gym

Frankie had his second class at My Gym on Monday. I asked the teacher if he could put tape on the bottom stair so Frankie could see when he was at the last stair. So a strip of yellow tape was put on the top edge of the stair.
It seemed to make a difference for him. Last week he would not know when he was at the bottom stair and sometimes fall off. This week I told him the yellow tape would be the last stair and then he had to step down one more time. He seemed to do quite well!

Large groups vs. small groups

I took Frankie to "Books and Babies" at our library on Friday, for children under 2. They have music, dancing, stories, puppets, etc. When I brought Lizzy when she was younger, she loved it! Frankie wanted to leave out the door and then started crying. I did not want to disrupt everyone, so we had to leave early.
He does so well at his EI class, and I was wondering about the differences between the 2. The EI class is small, about 8 kids in a circle, with the moms behind them. Each child sits on his own mat in the circle, so he has his own space. The teacher is at the front and every child can see her well. The song titles are on sheets of laminated paper that the children can see clearly and hold.
The storytime at the library is great, but there are many more children. There were probably 30 children plus their moms at the library. Each child does get a mat, but there is not a circle, people sit where they want in a big group. The teacher sits in the front on a chair, far away from some of the kids who are not siting in the front row. She reads a story with a flannel board to illustrate.
It is a great program, but I did not realize until after how hard it would be for Frankie. The amount of people was too much for him, he does not do well in large groups. We were sitting towards the front, but still not close enough that he could see the teacher clearly, and he probably could not even tell that she had a book. He would have had to sit on her lap to see it! Same with the flannel figures. It was just not interesting to him, because he could not see what was going on. I was encouraging him to sit even closer, but he was overwhelmed by this point and just wanted to leave.
I want to try again and this time get there early so we can get a close seat. I think I will talk to the librarian about his low vision and that he may need to get very close. Stayed tuned for how it goes.

Nystagmus

Nystagmus or "wobbly eyes" many times goes along with albinism. The American Nystagmus Network defines it as this: "Nystagmus is characterized by an involuntary movement of the eyes, which may reduce vision or be associated with other, more serious, conditions that limit vision. Nystagmus may be one of several infantile types or may be acquired later in life."
Frankie has nystagmus along with albinism. His eyes wobble back and forth and it gets worse when he is tired. It has gotten better since he was a baby, though. Sometimes it is hard to tell where he is looking. I have ordered this book: All Children Have Different Eyes. It is about a boy with nystagmus. There is also a girl in it with crossed eyes, which my daughter, Lizzy, had and was corrected by surgery.
I sometimes worry about the nystagmus in regard to Frankie learning to read. His eyes will get so much more tired than other children. I worry that reading will not be enjoyable to him. I am thinking about teaching him braille, so he can always use that when he does get tired. I will talk it over with his TVI and make the best decision for him.

Depth Perception

Depth perception is a big issue for children with albinism. Frankie has trouble with stairs and changes in floor surfaces. He loves to climb stairs now, but has trouble usually at the bottom. He can't judge where the bottom of the stair is and when he has one more stair to go. He usually thinks he is done with the stairs, but has another one to go.
If there is a slight step down, such as going from a rug to a floor, he probably wouldn't notice this. Sometimes if it is a bigger step down he will fall, but he is quite resilient.
We were at a Christmas party in December, and there was a slight "bump" on the floor in the doorway. He looked down at it and it looked as big as a stair to him, because he got down on his hands and knees and went down it backwards as if he was going down a stair. It was cute and sad at the same time!

Children's Museum

We took Lizzy and Frankie to the Children's Museum on Saturday. I had not been there since it was redone in the late spring 2007. There were so many great exhibits for both of their ages! Lizzy (6) loved the supermarket and checking out the food. She enjoyed the climbing in the "birdcage" and in the other climbing structures. Frankie (20 months) enjoyed the bubbles a lot! He also liked the room with balls and climbing through tubes. He didn't really have challenges there because of his vision. It was fun for all! I would recommend the museum for all kids. It was great for a vision impaired child, as well.

Perkins

Perkins School for the Blind has been incredible! Frankie receives EI services and a teacher of the visually impaired (TVI) comes to our house once a month to work with him. She brings great tools that are especially for vision impaired children. He has a peg board that is blue with neon yellow pegs, that she brought. The contrast is great for him, he can get he pegs into the holes pretty well. My daughter, Lizzy, and I clap for him when he gets them in. One day he took the knob at the end of her bed off and then put it back in and then clapped for himself! It was cute, and funny!
We also did an albinism class at Perkins last spring. All the people attending had children with albinism! The parents met together to talk and learn, while the children engaged in activities with teachers downstairs. It was so great to meet other moms with children with albinism and know I was not alone! Or how I was feeling was not just me. I learned so much and made great friends!

Early Intervention

Frankie has received services from Early Intervention (EI) since we was 5 months old. He started out not seeing or responding much. It is amazing to see the transformation to where he is today! In the beginning he would not respond to a toy in front of him. The toy needed to rattle or make noise for him to turn towards it. I remember putting him in the exer-saucer and he had no idea that there were toys on it.
His EI teacher worked a lot on getting him to move towards the noise and also grabbing for things once he heard them. He would remember certain toys and learn what to do with them.
It was nice to have someone come to help him and to ask questions of, and still is!
Now he does so much more with his teacher. He gets excited just seeing the certain toy and loves to examine toys. He will bring them up close to his face and really study all the different parts! She is also working on speech with him and he knows some basic signs.
We also get to go to an age appropriate playgroup once a week. Frankie enjoys playing, sensory table, art, music, gross motor play, circle time, songs and parachute. He loves it all and interacts with the other kids a bit too. I think EI is great and so helpful in the early years!

Peacock with Albinism

I just loved this picture of a peacock with albinism. It is so beautiful.

My Gym class

Frankie won 4 free classes at My Gym! We went to the first one on Monday. The people were very nice and great with the kids. Frankie loved climbing up and down the stairs that lead up to a playhouse and slide. He didn't make it to the slide, he just enjoyed going up and down the stairs. They were small with a railing, so he was gaining more confidence. He had trouble seeing the last stair and realizing he was at the bottom. I was telling his EI teacher and she asked if there was tape on the stairs, so he would know where the edge was. I said no, the stairs were blue and the rug on the floor was blue, as well. It was a challenge because he could not distinguish between the blues and the depth of the last stair.
It just got me thinking about how things are not always going to be adapted for someone with a visual impairment. But he is determined and kept at those stairs most of the hour long class!

Hats, Hats, Hats!!

Since sun protection is so important for kids with Albinism, Frankie has quite a collection of hats!! Baseball caps, bucket hats, flap hats, visors . . . we love hats! Baseball caps are great and you can get kids size ones in your favorite team, but make sure sunblock is applied to the back of the neck. Bucket hats supply more shade all around the child's head. Flap hats are great because they cover the whole back of the neck and sides too! They come in many beach themes. Visors tend to have a big brim, but again be aware of the back of the neck.
I really like the flap hats at Rugged Bear, they are called Flap Happy. Baby Banz has great flap hats, and One Step Ahead, as well.
Hats just become part of the wardrobe! I think they are great for sun protection for all. My daughter wears a lot of hats also. Let me know other places that you buy hats!

Sun Protection

Sun protection seemed quite overwhelming last year. I didn't know where to start! But we made it through Frankie's first summer of being out and about. We limited sun time and he napped during most of the peak sun time. Luckily our backyard is very shady and we got a swing set, so that was great!
For sunblock I really liked the Banana Boat Baby tear free 50. It worked well, he was well protected and it was gentle to his skin and eyes. The key is to reapply the sunblock frequently! And use it even on cloudy days.
Sunglasses are also very important for children with Albinism. The glare really bothers them and the sunglasses do wonders. I love the Baby Banz sunglasses.
There are also some great sun protective clothes with UV 50 protection in them. Last year I purchased clothes from One Step Ahead. I also was pleased with their car sunshades. If anyone else has good recommendations on car sun shades, please let me know.
Because people with albinism don't get much sun exposure with sunblock on, they need to be cautious about getting enough vitamin D. I made sure Frankie drinks plenty of milk, I buy fortified orange juice and he also takes a multi vitamin to be on the safe side.
The sun issues get easier with time and it becomes second nature to keep applying the sunblock and bringing it everywhere! Frankie loves to be outside, he would be out even all winter!

Resources

Here are some of the resources that I have found helpful!

www.albinism.org - NOAH organization

www.positiveexposure.org - Celebrates the beauty of human diversity.

www.enableinc.org/eip.html - Enable early intervention

www.toddlertime.org - EI's playgroups

www.perkins.org - Perkins School for the Blind

www.onestepahead.com - Sells sun protective gear; sunblock, clothes, tents.

www.babybanz.com/usa - Sells sunglasses, hats, swimsuits.

albinism.med.umn.edu - International Albinism Center

www.nystagmus.org - American Nystagmus Network, great books

www.lowvisionkids.com - "All Children Have Different Eyes" book

Frankie

Frankie was born in May of 2006, greeted by myself, my husband and big sister Lizzy. He was born with a little bit of white hair and white eyebrows. Being quite light ourselves, we did not think too much of it.
Having a daughter and a son was a great feeling, "one of each". Frankie was an easy baby, not really crying too much while waiting for his bottle to warm up! While holding him, I felt as though he were more vulnerable than my daughter, but did not know why.
It was not until he was about 4 month old that I started to notice his poor vision. I had read that babies could track objects by this age, and noticed he could not. A stuffed animal fell towards his face and he did not even blink! We took him to my daughter's eye doctor, and a diagnosis of ocular cutaneous albinism was given. I watched as he did not respond to any flashlights, objects, etc. We were told he knew us by our voices, not our faces!
I know I was in shock as I told family and friends that first day, just reciting what I had been told by the doctor. This shock lasted a while, maybe a month or 2. I was sad about it, but more in shock, looking back on it. I was told he would see better as he got older, but as a mother of a little baby, I was just upset by the fact that he was almost blind! Looking ahead was not something I could do at that point.
In time my shock turned to sadness, one I had not ever experience before. He did start to see more and respond to visual cues, but I still could not get over the fact that he would never see as well as others. That he would be different in some way. It took me about a year to feel ok again and celebrate his albinism. It is just now that I can write about it and tell others about his condition without feeling sad.
People say that going though difficult things makes you stronger. I can't say that for all people, but somehow this experience has made me stronger. I am now happy that Frankie has white hair and eyebrows. I would not change a thing about him. He has brought us all so much joy! He and his big sister Lizzy love each other so and it is so heartwarming to watch them together.

Welcome to my blog

Hello,

I am a mom of a child with albinism. Albinism is a genetic condition effecting a person's vision, skin and hair. Because of a lack of pigment, children are born with white hair and skin, and poor vision.

I thought I would start this blog to hopefully connect and help others who have albinism or children with albinism. I will try to update with information, thoughts, support
and some of my story with a child with albinism.


Thank you for reading!