This post is about my son and hugging. He doesn’t really like being hugged. It’s not so much that he dislikes hugs for hugs sake, I think it’s more that it’s an interruption to what he’s doing or that he’s not in control of his body when you’re hugging him.
He doesn’t run away from hugs, but he doesn’t run to hug you either. So I decided to work on it. I’m thinking, like most things, that as parents we had a big factor in the hug (or lack of hug) stance my son has. We made sure the children were find when we left to go out by not making a large event of our leaving, giving hugs, saying we’ll be back and to not miss us, etc. And on that front we’ve been very successful.
We’ve done the same with bedtime and I’m glad to say our children don’t need a lot of external comfort to go to sleep. They can give self-comfort well and nightmares excepting, they go to sleep easily all by themselves without a big to do.
But I do like to hug my son and with the recent sensorial evaluation and issues at school I’ve been making an effort to come over to him at random times and hug him. Hug just his shoulders or legs if he’s busy, but do so in a way that gives a firm, steady contact with his body.
Initially my son wasn’t so sure about it but he’s gotten interested more and more. He doesn’t even flinch now when I come up to him and he’s busy, I think he even likes it as sometimes just my proximity will start a thoughtful dialog from him.
But he’s still a no way on the kissing. Apparently I would hug and kiss him at the same time, wherever my face was so a hug with a kiss on his shoulder for instance. We had some negotiations in which it took days for him to believe me that I wasn’t going to kiss him, I promised, only hug. Once he was okay with that he let me do the hugging, initially with resistance but now with what I hope is happiness.
But I had to ask. I asked yesterday if I could give him a kiss. I could tell he wanted one, but he had to hold up that air of hating kisses so he begrudgingly said yes. Then tonight I came downstairs and asked if I could give him a kiss—on top of his green hair’d head—and he said yes again. After I kissed him he said, “you can kiss me any time if you want, but only on the top of the head.” I told him I’d take it.
The Big Boy Update: My son is interested in infinity and in a not related to infinity way, dragons. So I had him watch Vi Hart’s dragon doodling on YouTube. It’s high-level math concepts, but it’s done in a way that’s still somehow intriguing and interesting even to a child who’s not quite seven-years-old. He kept watching her and started making math doodles on his notebook while he watched.
The Tiny Girl Chronicles: My daughter experienced the loss of a stamp today. We debated if it was a bad thing to use stamp loss as a negative motivator or if we were only using the stamps as a positive motivator like we do the pompon bowl. But it worked, she lost a stamp and even though she had loads saved up, that was important enough for her to not want to have it happen again.
Thursday, November 30, 2017
Wednesday, November 29, 2017
Office Record
I broke an office record today. It wasn’t a record I was looking to break. It wasn’t even a record I knew existed. It also wasn’t my office.
I had an appointment a doctor today. It’s not one I see frequently and his office isn’t close to where I live. The last time I saw him I found out he had a few days a month that he saw patients in an office a single block from my son’s school, which is quite close to where we live. Sign me up, book me in advance and make sure it’s on a day he’s at this much closer location.
Today was the appointment and everything was fine, going well, nothing wrong, glad to see you, etc. We discussed some things and decided to run blood work to make sure everything was still good there too. The doctor left and said his nurse would be right back in to draw blood.
She came in and we kept chatting while she got ready to draw three vials of blood. She complimented me on my veins, saying they looked very easy (I suppose that means they were bulgy). She stuck me with the needle and nothing happened. She moved the needle around and still nothing. Strange, she said, it looked like a good vein.
Not to worry, she’d try the other arm. It might be good at this point to mention I don’t really have a problem with needles, because if you’ve read this far I’m betting you have an idea where the rest of the post is going—it’s needly.
She tried the other arm. I did exactly as told and kept still. But no go. Did the vein roll on her? It looked so good, she said. She said she didn’t miss usually and this was making her look bad. We laughed about it and she went back to the first arm, different vein because the first vein had a nice sized hematoma under he skin from the jiggling around of the needle.
I asked her if she had to throw away the needle assembly every time considering it was the same body she was poking. Apparently she had to. Back to the third try, no go. So back to the second arm, this time trying the first vein because it didn’t look that bad after the first try. Maybe a little bit happened but it was like the veins were avoiding her.
Had I had liquids? Was I dehydrated? I ran through my morning of two large hot teas with excessive amounts of milk and estimated I’d had over thirty ounces of liquid since I’d gotten up. After the fourth try she went to get another nurse from the other side of the office who was an expert. When Lasha came in she said she had this and not to worry.
Back to the, heck, I don’t even remember what arm and vein we’re on at this point but try five was also a failure. And now Lasha is telling me she’s taking me back to her lab because this just doesn’t happen.
Things I’ve said at this point include, “I can go drink a lot of water and come back in a few hours it that will help”. They said I didn’t look dehydrated from the state of my veins. I also offered to come back another day and be sure I was hydrated then. But that caused another issue. Remember how my doctor was only at this location every so often? This blood work had to be drawn today and if they couldn’t get the blood drawn they’d have to send me to the hospital. This sounds extreme, especially for an elective running of blood work I had initially suggested. But processes had ben set in motion. Electronic documents had been completed. Signs had aligned and there were reasons once committed to having my blood drawn, going back to having having it un-drawn was akin to declaring oneself legally not dead.
I didn’t argue because we were sort of having fun and they were trying their best. I said I thought my heart was still beating and if I was patient zero in the zombie apocalypse I was going to be annoyed, because I had holiday plans.
We went down the hall to the other side of the clinic and Lasha got me set up in her chair. We had postulated that their needles were possibly a bad batch because I’ve just never had problems with my blood being drawn before; I’m typically fairly easy. Try six with a different batch of needles and Lasha got exasperated. They weren’t just sticking my arm, they were investigating each time, trying to find the vein. And that was particularly exasperating to them.
Lasha said she’d be back and brought Keshia back. Keshia also never failed and the karma with three nurses who did this every day in the room, the seventh try just had to work. And it finally did. Once they got in the vein there was plenty of flow and the test tubes were filled up quickly.
Lasha said I had beaten the record of most sticks. I don’t think there actually was a record but I said I expected to have my name on the wall going forward and that I hoped no one beat my record because hey, no one enjoys being stuck with a needle.
The Big Boy Update: My son was building in Minecraft this weekend. I came down to the basement to see what looked like a graveyard of three grave plots. Indeed they were graves, my son said. He had even made a little sign and had spelled, “Rest in Pese Steve” on it. I said, “oh, did Steve die?” My son backed up in the game and said, “yes, he’s right here.” My son removed the ground layer in front of the gravestone and sure enough, he’d buried the Minecraft character Steve.
The Tiny Girl Chronicles: My son had terrible eczema for a long time when he was younger. As my daughter gets older she’s gone from none, to bad bouts of it. She’s got it all over in a minor way and badly in a few spots. She would rather scratch than let me put lotion on her, which isn’t helping her skin heal. I got some steroid cream on the worst spots last night though and she looks better today.
I had an appointment a doctor today. It’s not one I see frequently and his office isn’t close to where I live. The last time I saw him I found out he had a few days a month that he saw patients in an office a single block from my son’s school, which is quite close to where we live. Sign me up, book me in advance and make sure it’s on a day he’s at this much closer location.
Today was the appointment and everything was fine, going well, nothing wrong, glad to see you, etc. We discussed some things and decided to run blood work to make sure everything was still good there too. The doctor left and said his nurse would be right back in to draw blood.
She came in and we kept chatting while she got ready to draw three vials of blood. She complimented me on my veins, saying they looked very easy (I suppose that means they were bulgy). She stuck me with the needle and nothing happened. She moved the needle around and still nothing. Strange, she said, it looked like a good vein.
Not to worry, she’d try the other arm. It might be good at this point to mention I don’t really have a problem with needles, because if you’ve read this far I’m betting you have an idea where the rest of the post is going—it’s needly.
She tried the other arm. I did exactly as told and kept still. But no go. Did the vein roll on her? It looked so good, she said. She said she didn’t miss usually and this was making her look bad. We laughed about it and she went back to the first arm, different vein because the first vein had a nice sized hematoma under he skin from the jiggling around of the needle.
I asked her if she had to throw away the needle assembly every time considering it was the same body she was poking. Apparently she had to. Back to the third try, no go. So back to the second arm, this time trying the first vein because it didn’t look that bad after the first try. Maybe a little bit happened but it was like the veins were avoiding her.
Had I had liquids? Was I dehydrated? I ran through my morning of two large hot teas with excessive amounts of milk and estimated I’d had over thirty ounces of liquid since I’d gotten up. After the fourth try she went to get another nurse from the other side of the office who was an expert. When Lasha came in she said she had this and not to worry.
Back to the, heck, I don’t even remember what arm and vein we’re on at this point but try five was also a failure. And now Lasha is telling me she’s taking me back to her lab because this just doesn’t happen.
Things I’ve said at this point include, “I can go drink a lot of water and come back in a few hours it that will help”. They said I didn’t look dehydrated from the state of my veins. I also offered to come back another day and be sure I was hydrated then. But that caused another issue. Remember how my doctor was only at this location every so often? This blood work had to be drawn today and if they couldn’t get the blood drawn they’d have to send me to the hospital. This sounds extreme, especially for an elective running of blood work I had initially suggested. But processes had ben set in motion. Electronic documents had been completed. Signs had aligned and there were reasons once committed to having my blood drawn, going back to having having it un-drawn was akin to declaring oneself legally not dead.
I didn’t argue because we were sort of having fun and they were trying their best. I said I thought my heart was still beating and if I was patient zero in the zombie apocalypse I was going to be annoyed, because I had holiday plans.
We went down the hall to the other side of the clinic and Lasha got me set up in her chair. We had postulated that their needles were possibly a bad batch because I’ve just never had problems with my blood being drawn before; I’m typically fairly easy. Try six with a different batch of needles and Lasha got exasperated. They weren’t just sticking my arm, they were investigating each time, trying to find the vein. And that was particularly exasperating to them.
Lasha said she’d be back and brought Keshia back. Keshia also never failed and the karma with three nurses who did this every day in the room, the seventh try just had to work. And it finally did. Once they got in the vein there was plenty of flow and the test tubes were filled up quickly.
Lasha said I had beaten the record of most sticks. I don’t think there actually was a record but I said I expected to have my name on the wall going forward and that I hoped no one beat my record because hey, no one enjoys being stuck with a needle.
The Big Boy Update: My son was building in Minecraft this weekend. I came down to the basement to see what looked like a graveyard of three grave plots. Indeed they were graves, my son said. He had even made a little sign and had spelled, “Rest in Pese Steve” on it. I said, “oh, did Steve die?” My son backed up in the game and said, “yes, he’s right here.” My son removed the ground layer in front of the gravestone and sure enough, he’d buried the Minecraft character Steve.
The Tiny Girl Chronicles: My son had terrible eczema for a long time when he was younger. As my daughter gets older she’s gone from none, to bad bouts of it. She’s got it all over in a minor way and badly in a few spots. She would rather scratch than let me put lotion on her, which isn’t helping her skin heal. I got some steroid cream on the worst spots last night though and she looks better today.
Tuesday, November 28, 2017
Who Does the Cooking?
It’s been a day. One of those days that has come to an end and I’m just not sure I’ve got the energy to put forth the effort to write a blog post. But I did hear a conversation that was funny while I was out of the room tonight.
My husband and children had sat down to dinner and I was heading in. My husband likes to cook and has for the time we’ve been married been almost exclusively the one who does the cooking. He told me once, “thanks for letting me cook dinner tonight”. My children know that their father does all the cooking but it wasn’t until tonight that I got their perspective on the matter:
The Big Boy Tiny Girl Does Mom Know How to Cook Conversation: My daughter asked, “has mommy ever cooked dinner? My son replied, “no”. My husband, trying to be helpful said, “she has one dish” and then because I think he thought he’d better revise his statement he said, “she knows how to cook”. My daughter helpfully cried out, “egg salad!”
My husband and children had sat down to dinner and I was heading in. My husband likes to cook and has for the time we’ve been married been almost exclusively the one who does the cooking. He told me once, “thanks for letting me cook dinner tonight”. My children know that their father does all the cooking but it wasn’t until tonight that I got their perspective on the matter:
The Big Boy Tiny Girl Does Mom Know How to Cook Conversation: My daughter asked, “has mommy ever cooked dinner? My son replied, “no”. My husband, trying to be helpful said, “she has one dish” and then because I think he thought he’d better revise his statement he said, “she knows how to cook”. My daughter helpfully cried out, “egg salad!”
Monday, November 27, 2017
The Oldest Scar
I was looking at my leg the other day and I saw a scar on the outside of my left knee. It’s been there for a long time. It’s possibly the oldest scar I have. It’s about one inch long. I have a lot of little scars and marks on my body at this age, indicating maybe a life of hazard or perhaps a life well lived, I don’t know.
This particular scar I remember exactly how I got when I was young. I don’t know how old I was but I was old enough to take out the trash. Back then our trash can was a round, metal bin that sat in the far back of our yard. On trash or was it garbage days, back then they were separate I think, we’d have a man step off the garbage truck and walk through our yard as well as the close neighbor’s yards and collect the trash.
He would walk past the hammock I spent untold hours swinging in in the years to come, open up our metal bin and take out any bags of garbage inside. He would put them into the larger, plastic bin on he propped up on his back and then head to the next house. The garbage truck would pick him up at the end of the street around the corner.
On this particular day my mother asked me if I would take out the full garbage bag and put it into the metal bin. And also, could I make sure the lid was on tightly because there had been a raccoon problem and the lid tightly on would keep out any interlopers.
I wanted to be sure to do a good job. My father had securely fixed the trash can by adding wooden stakes around its perimeter. With this knowledge in hand I put the bag of garbage in, put the lid on, climbed on top and then jumped up and down on the lid to make sure there was no chance it would be pried off. I wasn’t expecting the lid to slip. And I wasn’t expecting to fall.
I fell off and on the way down got a deep scrape in my left leg on a the sharp corner of one of the stakes. I remember looking at my leg and seeing no blood, only the white, fatty tissue underneath—initially. And then it started to bleed. A lot.
I ran in and at that point my memory has faded, but what remains today is the scar line from that day that I made sure no raccoon could possibly tear into our trash.
The Big Boy Update: I had a board meeting tonight. When I returned home the children were in bed but my husband said my son had left me something on my nightstand. My son hasn’t been that interested in writing, it being mostly a chore to him—unlike math, which he finds enjoyable. He had written a full page about when he was born and who his family members were. I’m looking forward to telling him how much I enjoyed reading it when I see him in the morning.
The Tiny Girl Chronicles: My daughter has been using my husband’s Virtual Reality Oculus Rift glasses a lot lately. They turn things three dimensional, but they do so at a fixed focal length—possibly a focal length she can see well in. She can spend hours working on Minecraft with the glasses on.
This particular scar I remember exactly how I got when I was young. I don’t know how old I was but I was old enough to take out the trash. Back then our trash can was a round, metal bin that sat in the far back of our yard. On trash or was it garbage days, back then they were separate I think, we’d have a man step off the garbage truck and walk through our yard as well as the close neighbor’s yards and collect the trash.
He would walk past the hammock I spent untold hours swinging in in the years to come, open up our metal bin and take out any bags of garbage inside. He would put them into the larger, plastic bin on he propped up on his back and then head to the next house. The garbage truck would pick him up at the end of the street around the corner.
On this particular day my mother asked me if I would take out the full garbage bag and put it into the metal bin. And also, could I make sure the lid was on tightly because there had been a raccoon problem and the lid tightly on would keep out any interlopers.
I wanted to be sure to do a good job. My father had securely fixed the trash can by adding wooden stakes around its perimeter. With this knowledge in hand I put the bag of garbage in, put the lid on, climbed on top and then jumped up and down on the lid to make sure there was no chance it would be pried off. I wasn’t expecting the lid to slip. And I wasn’t expecting to fall.
I fell off and on the way down got a deep scrape in my left leg on a the sharp corner of one of the stakes. I remember looking at my leg and seeing no blood, only the white, fatty tissue underneath—initially. And then it started to bleed. A lot.
I ran in and at that point my memory has faded, but what remains today is the scar line from that day that I made sure no raccoon could possibly tear into our trash.
The Big Boy Update: I had a board meeting tonight. When I returned home the children were in bed but my husband said my son had left me something on my nightstand. My son hasn’t been that interested in writing, it being mostly a chore to him—unlike math, which he finds enjoyable. He had written a full page about when he was born and who his family members were. I’m looking forward to telling him how much I enjoyed reading it when I see him in the morning.
The Tiny Girl Chronicles: My daughter has been using my husband’s Virtual Reality Oculus Rift glasses a lot lately. They turn things three dimensional, but they do so at a fixed focal length—possibly a focal length she can see well in. She can spend hours working on Minecraft with the glasses on.
Sunday, November 26, 2017
Free Matter Shipping
I was ordering some braille paper online yesterday. There aren’t too many options so my browsing didn’t last that long. I found some label paper that we can use to put labels on things in the house or on belongings. Or we can translate books to braille and stick them on the pages (one we learn to write contracted braille that is).
When I got to the check out page it asked what type of shipping I wanted and there were options. One of the options was Free Matter Shipping For the Blind. Well heck, I knew we’d gotten some things free, but it hadn’t occurred to me that we could get things ordered online mailed to my daughter for free.
It isn’t everything, it’s reading and print-based things, but it’s nice to have the papers sent without postage. We might have to have my daughter registered with the USPS for official purposes. Maybe my husband wants to look into that—it’s just his kind of thing,
The Big Boy Update: No idea on the background for how this question came about. My son asked today, “Dad, was Zeus the sixteenth president?”
The Tiny Girl Chronicles: We were at Panera the other day and had ordered food. We got our drinks and sat down at the table. After about a minute my daughter said, “do we have one of those sizzling things?” My husband said, “you mean vibrating things?” She wanted to hold the “sizzling” thing so that when it vibrated we’d know it was time to go up and get our food.
When I got to the check out page it asked what type of shipping I wanted and there were options. One of the options was Free Matter Shipping For the Blind. Well heck, I knew we’d gotten some things free, but it hadn’t occurred to me that we could get things ordered online mailed to my daughter for free.
It isn’t everything, it’s reading and print-based things, but it’s nice to have the papers sent without postage. We might have to have my daughter registered with the USPS for official purposes. Maybe my husband wants to look into that—it’s just his kind of thing,
The Big Boy Update: No idea on the background for how this question came about. My son asked today, “Dad, was Zeus the sixteenth president?”
The Tiny Girl Chronicles: We were at Panera the other day and had ordered food. We got our drinks and sat down at the table. After about a minute my daughter said, “do we have one of those sizzling things?” My husband said, “you mean vibrating things?” She wanted to hold the “sizzling” thing so that when it vibrated we’d know it was time to go up and get our food.
Saturday, November 25, 2017
Blind Spot
This isn’t about my daughter’s vision, it’s about that place in the car where you as a driver can’t see another car. I have a bit of an overactive worry about changing lanes into someone who’s in my blind spot. I’m not sure if this is from excessive warnings from my driver’s education teacher when I was in high school or if it’s from near misses by me.
It’s one of those things that gets negatively reinforced over time. I’ve always become slightly anxious when I’m a passenger in a car and I notice our driver hanging out and not moving out of a car’s blind spot. I’ve even said something on occasion when it looked like the other driver wasn’t the type who really paid attention (as if I could tell across two cars).
The blind spot can be defeated by using your mirrors well in conjunction with turning around. And I always turn around, even though it’s hard for me to do because it’s more of a me turning around instead of my head turning around because with the fused vertebra in my neck I just can’t turn around that far.
But for some reason today I was lulled into complacency. It was probably a combination of two things. First, I was expecting there to be a fast beeping sound indicating I was close to another car. I wasn’t in the car I typically drive so I wasn’t getting that feedback. Secondly, I’d been in my lane for some time and peripherally we sort of keep mental track of what cars are where. I didn’t think there were any cars behind me.
So with my ignorance in tact I turned on the signal and began to change lanes to the right. And I heard a horn honk from that blind spot spot and so I moved back into my lane. Shortly the other driver passed me by and this is what happened: he gave me the thumbs up sign and smiled at me.
No finger, no angry glare—he was friendly. I smiled and did the silent “thanks” word back to him and our cars drifted apart. And I thought about it. I’d just made a mistake. I was expecting to be chided for it by the random person it almost impacted. But instead I got a different message. It was almost like, “we communicated through the horn and just prevented an accident together. Good teamwork”.
I don’t know who that guy is, but next he sort of made my day simply by not being angry at me for making a mistake. I’m going to try and do the same in the future if someone almost lane changes into me.
The Big Boy Update: My son was playing with the remnants of his chocolate pudding pie slice last night. He was smearing it all over his plate, getting full coverage in a circular pattern. Grandpa asked him to stop but he said, “I’m making a chocolate world!”
The Tiny Girl Chronicles: My daughter has been helping me take care of our friend’s cats. One of their cats is very friendly and exceptionally tolerant. She picks him up and carries him around. She told me, “Mr. Cuddles is my best friend cat. I love him.”
It’s one of those things that gets negatively reinforced over time. I’ve always become slightly anxious when I’m a passenger in a car and I notice our driver hanging out and not moving out of a car’s blind spot. I’ve even said something on occasion when it looked like the other driver wasn’t the type who really paid attention (as if I could tell across two cars).
The blind spot can be defeated by using your mirrors well in conjunction with turning around. And I always turn around, even though it’s hard for me to do because it’s more of a me turning around instead of my head turning around because with the fused vertebra in my neck I just can’t turn around that far.
But for some reason today I was lulled into complacency. It was probably a combination of two things. First, I was expecting there to be a fast beeping sound indicating I was close to another car. I wasn’t in the car I typically drive so I wasn’t getting that feedback. Secondly, I’d been in my lane for some time and peripherally we sort of keep mental track of what cars are where. I didn’t think there were any cars behind me.
So with my ignorance in tact I turned on the signal and began to change lanes to the right. And I heard a horn honk from that blind spot spot and so I moved back into my lane. Shortly the other driver passed me by and this is what happened: he gave me the thumbs up sign and smiled at me.
No finger, no angry glare—he was friendly. I smiled and did the silent “thanks” word back to him and our cars drifted apart. And I thought about it. I’d just made a mistake. I was expecting to be chided for it by the random person it almost impacted. But instead I got a different message. It was almost like, “we communicated through the horn and just prevented an accident together. Good teamwork”.
I don’t know who that guy is, but next he sort of made my day simply by not being angry at me for making a mistake. I’m going to try and do the same in the future if someone almost lane changes into me.
The Big Boy Update: My son was playing with the remnants of his chocolate pudding pie slice last night. He was smearing it all over his plate, getting full coverage in a circular pattern. Grandpa asked him to stop but he said, “I’m making a chocolate world!”
The Tiny Girl Chronicles: My daughter has been helping me take care of our friend’s cats. One of their cats is very friendly and exceptionally tolerant. She picks him up and carries him around. She told me, “Mr. Cuddles is my best friend cat. I love him.”
Friday, November 24, 2017
Reading The Cards
My daughter likes to play cards. Nana taught her how to play War and since that time my daughter has modified and changed and invented new ways to play that game. She wants you to play with yer, but if you’re busy, say making lunches for the next day, she’ll gladly say she’ll wait for you. What this means is she’ll be busy cheating by stacking the deck before you get there.
Initially she was able to do this by discerning face cards as they had more color in the middle of the cards. She could get aces as well because they had the least amount of information on the card face. Beyond that she wasn’t able to do a lot of fine-grained cheating but it was enough to win the game as a landslide.
As she played more she learned the card suits. She can’t always tell what suit a card is, but she can get the number on the card. And this part is what’s improved we think. A while back she was having to count the pips on the card to determine the number. Now she’s able to read the number in the top corner and check by counting pips if needed.
She can’t see what my cards are as that’s way far out of focal range but that’s not a problem, she’ll just ask you to tell her what cards you have. This part isn’t cheating, it’s skill, because we play a face-up version of War. There is strategy involved in seeing what cards your player has left, knowing they know what cards you have and that the lead follows the trick winner. As someone with sight, we can take in the opponents hand quickly. My daughter has to ask and then remember all the cards I have as well as what she has.
My mother-in-law is in for the Thanksgiving holiday and she played cards with my daughter on the first day and she came out of the room and whispered to me in an excited voice, “she can see the cards!” I told her we were pretty excited about it.
So good news there. But I always have to temper it with where we really are. I do this probably more for myself than anyone. I have to always keep in mind that she isn’t ever going to have anything remotely close to normal vision. There isn’t much we can do to help her regain her vision but we’re doing what we can to help keep her from losing more vision.
Here are some things from today on how my daughter sees (or doesn’t see) the world. She can see curbs fairly well and only misses one in ten. Steps are hit and miss depending on the light angle. Going down is hard, going up is almost always easy to see. In a store she didn’t run into anything hard, although she found some of the clothes racks quite comfortable when she walked into them. At our friend’s house she found the six metal food bowls in different locations half from memory and half from sight. She wanted to play with the cats but she couldn’t see them even when they were right in front of her unless the light was very bright like in the bathroom. And at Five Below, she can pick out items on the shelves without knocking them down, which is a good improvement in vision.
So things have gotten better, but she’s still quite blind. She can navigate more safely in the world but she’s accommodating more and learning more secondary skills as well. But there is this one niche where she can see. Maybe that will keep improving little by little.
The Big Boy Update: My children were in bed the other night and I was finishing story time. The lights were out and the children were quiet. I said, “are you awake?” My son replied, “we’re holograms, so we can’t talk”.
The Tiny Girl Chronicles: My daughter’s wanting dessert but she wasn’t eating her meal. She said, “Daddy, I’m more really eating because my heart hurts”. Dad let her know that heartache or not, dessert wasn’t available unless dinner was finished.
Initially she was able to do this by discerning face cards as they had more color in the middle of the cards. She could get aces as well because they had the least amount of information on the card face. Beyond that she wasn’t able to do a lot of fine-grained cheating but it was enough to win the game as a landslide.
As she played more she learned the card suits. She can’t always tell what suit a card is, but she can get the number on the card. And this part is what’s improved we think. A while back she was having to count the pips on the card to determine the number. Now she’s able to read the number in the top corner and check by counting pips if needed.
She can’t see what my cards are as that’s way far out of focal range but that’s not a problem, she’ll just ask you to tell her what cards you have. This part isn’t cheating, it’s skill, because we play a face-up version of War. There is strategy involved in seeing what cards your player has left, knowing they know what cards you have and that the lead follows the trick winner. As someone with sight, we can take in the opponents hand quickly. My daughter has to ask and then remember all the cards I have as well as what she has.
My mother-in-law is in for the Thanksgiving holiday and she played cards with my daughter on the first day and she came out of the room and whispered to me in an excited voice, “she can see the cards!” I told her we were pretty excited about it.
So good news there. But I always have to temper it with where we really are. I do this probably more for myself than anyone. I have to always keep in mind that she isn’t ever going to have anything remotely close to normal vision. There isn’t much we can do to help her regain her vision but we’re doing what we can to help keep her from losing more vision.
Here are some things from today on how my daughter sees (or doesn’t see) the world. She can see curbs fairly well and only misses one in ten. Steps are hit and miss depending on the light angle. Going down is hard, going up is almost always easy to see. In a store she didn’t run into anything hard, although she found some of the clothes racks quite comfortable when she walked into them. At our friend’s house she found the six metal food bowls in different locations half from memory and half from sight. She wanted to play with the cats but she couldn’t see them even when they were right in front of her unless the light was very bright like in the bathroom. And at Five Below, she can pick out items on the shelves without knocking them down, which is a good improvement in vision.
So things have gotten better, but she’s still quite blind. She can navigate more safely in the world but she’s accommodating more and learning more secondary skills as well. But there is this one niche where she can see. Maybe that will keep improving little by little.
The Big Boy Update: My children were in bed the other night and I was finishing story time. The lights were out and the children were quiet. I said, “are you awake?” My son replied, “we’re holograms, so we can’t talk”.
The Tiny Girl Chronicles: My daughter’s wanting dessert but she wasn’t eating her meal. She said, “Daddy, I’m more really eating because my heart hurts”. Dad let her know that heartache or not, dessert wasn’t available unless dinner was finished.
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