IEP Meeting!!!!!

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

Doing Better!!!

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

IEP Meeting Tomorrow!!!

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

Genetics

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

Certificate of Blindness

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

Happy St. Patty's Day!

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.

Recovery

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

Surgery - March 6th

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

Pre-Surgery

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