Since our meeting Monday night, we have been using dimmer lights at home, and arranging Buddy so the lights are behind him, shining on us. The difference has been amazing. It is obvious that he CAN see us, and he responds by smiling at us when he looks at our faces.
People with OA have trouble with glare, which we knew, but we didn't realize that our lights were so bright that they were "blinding" him. I kept thinking that if he had trouble seeing, he needed more light, but in his case, just the opposite is true. The house is a little dark for my taste, but if it helps Buddy see better, I will definitely do it. We have been so excited to see his progress since we made the change.
Wednesday, February 27, 2013
Monday, February 25, 2013
First Visit
We had our first visit with a representative from the Florida school for the Deaf and the Blind. She was incredibly positive and encouraging. She said several times that Buddy will be able to do tons of things, and that his sight will improve over the next several months and years. Also, she said not to rule out anything at this point, because he will surprise us with all of his accomplishments. She went over the program and filled out a lot of paperwork. She will come back next Monday to perform an evaluation of his vision. In the meantime, we have homework.
We will be playing with Buddy with a flashlight to see what he is interested in.
We learned several things tonight. One, Buddy will be a lot more sensitive than we are to bright lights, so while he enjoys looking at them, he can see the things around him a lot better in dim light. So we will be using a lot fewer lights from now on. Also, we got him a great little night light that projects a picture that we will put in his Easter basket, and she said that will probably be great for him. I am looking forward to giving it to him.
Two, faces have very little contrast, so they are very hard for people with low vision to see. This means that Buddy does not look at us so much because the features on our faces are difficult to distinguish.
Three, a normal child's vision does not completely develop until they are 5-6 years old. So, Buddy's vision will continue to improve for awhile, and we can see just how much he can do!
There are also upcoming events that we can think about going to. On Saturday, there is an information fair, and later in March, there will be an Easter egg hunt. They have eggs that beep and chirp so that blind and visually impaired children can find them. Obviously, Buddy is too young to hunt for Easter eggs, but it might be nice to meet some other families.
I'll let you know how the flashlight games go.
We will be playing with Buddy with a flashlight to see what he is interested in.
We learned several things tonight. One, Buddy will be a lot more sensitive than we are to bright lights, so while he enjoys looking at them, he can see the things around him a lot better in dim light. So we will be using a lot fewer lights from now on. Also, we got him a great little night light that projects a picture that we will put in his Easter basket, and she said that will probably be great for him. I am looking forward to giving it to him.
Two, faces have very little contrast, so they are very hard for people with low vision to see. This means that Buddy does not look at us so much because the features on our faces are difficult to distinguish.
Three, a normal child's vision does not completely develop until they are 5-6 years old. So, Buddy's vision will continue to improve for awhile, and we can see just how much he can do!
There are also upcoming events that we can think about going to. On Saturday, there is an information fair, and later in March, there will be an Easter egg hunt. They have eggs that beep and chirp so that blind and visually impaired children can find them. Obviously, Buddy is too young to hunt for Easter eggs, but it might be nice to meet some other families.
I'll let you know how the flashlight games go.
Saturday, February 23, 2013
Upcoming Appointments
We will meet with someone from the Florida Deaf and Blind school on Monday to discuss an in-home program for Buddy. (I already mentioned this one.)
On the Monday after that, someone from the Early Steps program at UF will be coming to meet us. Everyone sounds so positive and enthusiastic. I'm excited to find out what we can do to help Buddy the most.
I would like to say at this point that I am extremely grateful for all of the help that has been made available to us, and this post is not meant to be disrespectful to these people in any way, but the next part just struck me as so funny that I had to write about it--plus, you can hear more about Buddy.
I think the questionnaire they sent us to fill out before the visit is rather humorous. It was very obviously intended for a much older child. I'm glad for the fact that we found out early, so that Buddy can get as much help as possible. Just for fun, here's the list of questions:
Favorite and least favorite:
When is your child most/least cooperative?
What frightens/calms your child?
How does your child assist/participate in the following daily routines?
What do you do to help your child learn?
What concerns do you have for your child?
I suppose these questions are reasonable, but they just don't really apply to Buddy.
So, um, he likes having soft things rubbed on his face, and his favorite toy/object is a burp cloth. This is also part of the answer to what calms him. If rubbing something soft on his face doesn't work, he likes listening to "Crazy Train," or really anything featuring Ozzie. I know. I'm disturbed by this, too.
If he doesn't like something, he cries. If he does like something, he smiles. Nothing really frightens him, and he's always cooperative unless he's hungry. He likes everyone he's met, and he doesn't help with daily routines unless you count swallowing milk placed in his mouth for him or kicking his feet and sucking on his fingers/forearms while you try to dress him. You know, typical baby behavior. Obviously, our concern is that he will not be able to see well enough to participate in daily activities, or the activities that my husband and I enjoy so much.
So, because I am a cooperative person, and because I think these questions are so humorously inappropriate for Buddy's age, I will fill out the questionnaire. The woman I spoke with on the phone suggested that he had "cognitive developmental delays due to visual impairment." It was at this point that I told her that he was only 3 months old and I wasn't really sure how his cognition was delayed, so I know that they are aware of his age. I guess many children are not diagnosed with visual impairment until they are much older, which makes me glad that we can start getting help early.
I'll let you know what we learn Monday night. Thanks for reading!
On the Monday after that, someone from the Early Steps program at UF will be coming to meet us. Everyone sounds so positive and enthusiastic. I'm excited to find out what we can do to help Buddy the most.
I would like to say at this point that I am extremely grateful for all of the help that has been made available to us, and this post is not meant to be disrespectful to these people in any way, but the next part just struck me as so funny that I had to write about it--plus, you can hear more about Buddy.
I think the questionnaire they sent us to fill out before the visit is rather humorous. It was very obviously intended for a much older child. I'm glad for the fact that we found out early, so that Buddy can get as much help as possible. Just for fun, here's the list of questions:
Favorite and least favorite:
- Activities and games
- Toys and objects
- Foods and eating
- People and playmates
When is your child most/least cooperative?
What frightens/calms your child?
How does your child assist/participate in the following daily routines?
- Feeding
- Dressing
- Toileting
- Bathing
What do you do to help your child learn?
What concerns do you have for your child?
I suppose these questions are reasonable, but they just don't really apply to Buddy.
So, um, he likes having soft things rubbed on his face, and his favorite toy/object is a burp cloth. This is also part of the answer to what calms him. If rubbing something soft on his face doesn't work, he likes listening to "Crazy Train," or really anything featuring Ozzie. I know. I'm disturbed by this, too.
If he doesn't like something, he cries. If he does like something, he smiles. Nothing really frightens him, and he's always cooperative unless he's hungry. He likes everyone he's met, and he doesn't help with daily routines unless you count swallowing milk placed in his mouth for him or kicking his feet and sucking on his fingers/forearms while you try to dress him. You know, typical baby behavior. Obviously, our concern is that he will not be able to see well enough to participate in daily activities, or the activities that my husband and I enjoy so much.
So, because I am a cooperative person, and because I think these questions are so humorously inappropriate for Buddy's age, I will fill out the questionnaire. The woman I spoke with on the phone suggested that he had "cognitive developmental delays due to visual impairment." It was at this point that I told her that he was only 3 months old and I wasn't really sure how his cognition was delayed, so I know that they are aware of his age. I guess many children are not diagnosed with visual impairment until they are much older, which makes me glad that we can start getting help early.
I'll let you know what we learn Monday night. Thanks for reading!
Monday, February 18, 2013
Good News!
I got phone calls from an early intervention program for the visually impaired and someone who provides in home support for the visually impaired from the Florida School for the Deaf and Blind.
We'll meet with someone on Monday night. I am so excited to find out what we can do to help Buddy! I'll let you know what happens!
We'll meet with someone on Monday night. I am so excited to find out what we can do to help Buddy! I'll let you know what happens!
Sunday, February 17, 2013
A Campfire
Buddy had his first campfire last night. Even though it's Florida and has been in the 80's lately, we are having a freeze this weekend. Yesterday, we were trying to work on the house, and suddenly my husband decided that we needed to fix the drafty front door and have a campfire. We talked about our options. We live in Florida, in a 67 year old house. The front door is a frame around a jalousie window. I'm sure when it was put in, before air-conditioning, it was fantastic. Now, we can't open it when the weather is nice, and it just lets in a draft. We decided to replace the window screen with visqueen and to dig a fire pit. Random, I know. So anyway, my husband went to the hardware store to buy some visqueen and a shovel. I went to the store for hotdog buns and s'mores supplies.
So anyway, my husband dug a fire pit, and my sister and brother-in-law came over. When I first brought Buddy outside, he just stared at the light on the back porch. I turned him so he was looking at the fire. He seemed to like that, too. He watched it for the rest of the time we were outside. We finally had to go back in because of the cold, but it was fun.
We have been planning for so long for all the fun things we can do with Buddy. Then, we wondered, how can he do all the things that we love doing if he can't really see very well? We like hiking, and photography, and my husband likes cars and target shooting. After realizing that these may not be possible things for us to all enjoy, we decided to come up with new interests for all of us. Still, it is nice to be able to do "normal" stuff like have a campfire, and have Buddy enjoy it. We can't wait to do more things with him!
So anyway, my husband dug a fire pit, and my sister and brother-in-law came over. When I first brought Buddy outside, he just stared at the light on the back porch. I turned him so he was looking at the fire. He seemed to like that, too. He watched it for the rest of the time we were outside. We finally had to go back in because of the cold, but it was fun.
We have been planning for so long for all the fun things we can do with Buddy. Then, we wondered, how can he do all the things that we love doing if he can't really see very well? We like hiking, and photography, and my husband likes cars and target shooting. After realizing that these may not be possible things for us to all enjoy, we decided to come up with new interests for all of us. Still, it is nice to be able to do "normal" stuff like have a campfire, and have Buddy enjoy it. We can't wait to do more things with him!
Friday, February 15, 2013
Others
The reaction of others is an aspect of this that is comforting and distressing, depending on which "others" are reacting.
I have been amazed by the people that started researching right away and want to help us as much as possible. One of the professors that I work with said, "There has to be something that can help this. I will start researching this." I really appreciated the call I got in the middle of my workday from a friend letting me know she had heard about Buddy and was there if I needed anything. I appreciated my boss taking the time to list all of the sports she could think of that don't involve a ball that Buddy could participate in when he gets older.
It is frustrating when people assume we are devastated or depressed about this, and treat us like they are trying to cheer us up. The first two days were scary and we cried, but we are pretty much over it now. Also, we have read a lot about kids with ocular albinism, and they seem to be able to do lots of things, so we are hopeful for Buddy. It is also frustrating when people say, "Well, he can just get glasses." From what I have read, glasses won't help Buddy see any better.
I think the worst thing so far was walking through Walmart last weekend. A woman stopped us to see Buddy (which we are used to), and said, "What a beautiful baby. Is there something wrong with his eyes?" She had a child-like innocence, and I truly think she did not mean to be rude or hurtful, but it was difficult to politely tell her about Buddy's probable ocular albinism. It is very hard to think that we will have to hear things like that for the rest of Buddy's life. He is so wonderful and happy. I don't really notice his nystagmus, but I guess other people will.
I hope that people will react with kindness and love Buddy as much as I do.
I have been amazed by the people that started researching right away and want to help us as much as possible. One of the professors that I work with said, "There has to be something that can help this. I will start researching this." I really appreciated the call I got in the middle of my workday from a friend letting me know she had heard about Buddy and was there if I needed anything. I appreciated my boss taking the time to list all of the sports she could think of that don't involve a ball that Buddy could participate in when he gets older.
It is frustrating when people assume we are devastated or depressed about this, and treat us like they are trying to cheer us up. The first two days were scary and we cried, but we are pretty much over it now. Also, we have read a lot about kids with ocular albinism, and they seem to be able to do lots of things, so we are hopeful for Buddy. It is also frustrating when people say, "Well, he can just get glasses." From what I have read, glasses won't help Buddy see any better.
I think the worst thing so far was walking through Walmart last weekend. A woman stopped us to see Buddy (which we are used to), and said, "What a beautiful baby. Is there something wrong with his eyes?" She had a child-like innocence, and I truly think she did not mean to be rude or hurtful, but it was difficult to politely tell her about Buddy's probable ocular albinism. It is very hard to think that we will have to hear things like that for the rest of Buddy's life. He is so wonderful and happy. I don't really notice his nystagmus, but I guess other people will.
I hope that people will react with kindness and love Buddy as much as I do.
Wednesday, February 13, 2013
Encouragement
"Since it is so likely that children will meet cruel enemies, let them at least have heard of brave knights and heroic courage. Otherwise,you are making their destiny not brighter, but darker." --C.S. Lewis
I read this last night. This is something I can do. Buddy will have tons of examples of courage. I cannot keep people from being cruel, but I can show him how to show mercy and love to others.
I am sad that his eyes are not perfect, but I also realize that he has no idea that there is anything wrong. He is already so sweet, and I can only imagine that he will become a very compassionate person because of this.
I am so excited to see what great things he accomplishes!
I read this last night. This is something I can do. Buddy will have tons of examples of courage. I cannot keep people from being cruel, but I can show him how to show mercy and love to others.
I am sad that his eyes are not perfect, but I also realize that he has no idea that there is anything wrong. He is already so sweet, and I can only imagine that he will become a very compassionate person because of this.
I am so excited to see what great things he accomplishes!
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