Happy St. Patty's Day!

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

My own IEP letter, what I want for Frankie

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

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

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

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

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

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

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

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

This week's Evaluations

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

Relying on Hearing

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

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!

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! : )

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!

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!!!

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?

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!

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! : )

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!

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.

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.

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!

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.

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.