My son’s first week with the new screen time regime/rules/expectations/restrictions has gone very well. He’s very compliant to the point of managing things completely by himself. He’s not upset that he hasn’t earned any of the “bonus” times because they were strategically marked as “bonus”. That’s worked out well because he thinks he’s getting more time than the prior system but in fact he’s getting less time, in structured blocks of time and he’s doing all sorts of things at home to earn it.
The system we were using before was based on completing work at school. Now, with the Adderall, he’s completing his work every day without a problem. He gets upset if he’s bothered while he’s working, even when we came to see him for Bring Your Parents to School day (citing it as the, ‘worst day ever’ when we arrived). So that’s taken care of and we don’t need to incentivize him to work.
We changed gears and have a whole list of things he needs to do on a daily or weekly basis to get credit for his number one, highest value, most important reward: screen time. We live in a transactional world, one in which his father and I spend lots of time on screens ourselves. I’m not opposed to him having screen time but we need to have some expectations and controls around it.
Today my husband and daughter left for Detroit for her vitrectomy tomorrow with Dr. Trese. My son and I went to a birthday pool party and on our return, he had spent all his screen time for the weekend but still had a window of potential time redemption tonight. So I struck up a bargain.
First, he made his lunch for tomorrow. This is something I’d like him to start to do in the future. He’ll have control over what’s in his lunch (within constraints) and it will save me making it every day. Today I helped him make the lunch, giving him some prompts and letting him make choices. He did it pretty quickly.
The next thing wasn’t on his list of “bonus” items. I had a load of white cloths and another load of the children’s clothes. If he would work to fold them with me (diligently and with focus) we could get it done in fifteen minutes and he could earn a half-hour of additional screen time. He wasn’t so sure, so I told him about one of my tricks: listening to an audio book while I folded. It keeps your mind busy and the next thing you know, the laundry is all done.
I caught him at the right time too because he had just been listening to The Wizard of Oz while eating dinner. We picked up the audio book in the bedroom and folded two large loads of clothes and cloths while he listened. He was focused, he barely had to be given instruction. He got the work done with no complaints and no distractions. And we did it together. I think he might even be interested in helping in the future because it almost seemed easy to him, done in this way. I hope he’ll want to. I wouldn’t argue at the help.
The Big Boy Update: My son has a “frenemy" at school. Sometimes they’re friends, sometimes they’re enemies. Mostly they’re enemies when their personalities clash; they actually like each other quite a lot. Today we went to her birthday party and she and my son had the best, completely best friend caliber day. They both were on our parents cases about having a play date now, like tomorrow after school. Barring that, Tuesday, yeah, Tuesday would work too.
The Tiny Girl Chronicles: My daughter and Madison found a tiny frog this morning. They named it “Carrot” and made a habitat for it. She wanted to keep it indefinitely. I explained that while the habitat was lovely, we had no way to feed the frog the ants and insects it needed to survive. She told me I could catch bugs. I explained I didn’t know how I would do so and I don’t know how then to get them to the frog. She was having none of it. This evening my son and I decided to free Carrot back to the wild, what with him not looking so chipper anymore. My daughter called me when she got to Detroit and asked about Carrot. She was angry, to say the least, about his release. She cried. She said she’d never see him again. I explained he was right outside out door and I hoped she felt it was the right thing to do because I hoped she didn’t want him to die (she didn’t). But she was still mad. After a bit more crying she suddenly said, “I’m mad at you. Stupid Mom.” and then hung up on me.
Sunday, June 2, 2019
Saturday, June 1, 2019
Sleepover With Aditi
My daughter and her best friend from school, Aditi, who is also the other VI student in her class, are having a sleepover today at Aditi’s house. I took my daughter over at one o’clock and stayed until two, talking with her parents, getting a tour of their new house and meeting her brother, who has a bluetooth-enabled Star Wars bed.
The girls were very excited about the day, having planned lots of things together since we had the date picked out several weeks ago. So far they’ve played VI games, been to the pool, had pizza, done crafts and I believe have henna on their hands. I’m very glad they were able to go to the pool because on Monday, my daughter is having a vitrectomy with Dr. Trese in Detroit.
This means he’s going to remove the vitreous from her eye. The vitreous is the clear “jelly” in the center of the eye. They need to do this as the first step in addressing the high pressure in her eye. This would be the left, only functioning eye she has.
This may disrupt the minimal vision she has remaining, but we’re not sure until we find out from her after the surgery. Not doing this, and then a follow-on surgery to add a pressure reducing valve in her eye will result in the slow death of the retina and leave her completely blind. And while she doesn’t have much vision at all, some vision is better than no vision.
I was glad they had a chance to go to the pool today at Aditi’s house because my daughter won’t be able to swim for two weeks after the surgery. If we have a second surgery two weeks later, she will have a further two weeks without swimming—and that puts us mighty tight with our sailing trip at the start of July.
The Big Boy Update: My son has been adjusting well to the new screen time schedule. On the whole, it looks like he’s going to get a lot more screen time than before. But the catch is he has to earn it. We set it up so he could easily earn a good bit of it, while marking some things as, “bonus” so he wouldn’t be upset if he didn’t get those blocks of time but instead happy for earning extra. As predicted (by my husband and me) he’s electing not to do a good bit of the bonus items which means he’s earning a lot less screen time per day. He’s not counting though so he’s been happy with things. He also is restricted to redeeming earned screen time to certain hours of each day. This has also worked out better than expected. He looks forward to the upcoming time and when it’s up, there is no arguing about how much time he’s used.
The Tiny Girl Chronicles: My daughter was in the dog pen with the dog last night, which looked like this:
She suddenly went into a full conversation about being grateful. Fortunately I was at the computer at the time and got most of it written down. She was quite passionate about it. Here’s what she said: "I’m grateful for air, water, food and clothes and shelter. Matisse already has her clothes on...every day. And I’m also grateful because we have not only needs, we have wants. We have lots of things. Still, it seems sad, I really wanted to give a poor man money but then the light turned green and we had to go. Let’s say we had fifteen marshmallows and I got three of them. Do you know what I’d say? At least I got three of them, because some people don’t get any marshmallows."
The girls were very excited about the day, having planned lots of things together since we had the date picked out several weeks ago. So far they’ve played VI games, been to the pool, had pizza, done crafts and I believe have henna on their hands. I’m very glad they were able to go to the pool because on Monday, my daughter is having a vitrectomy with Dr. Trese in Detroit.
This means he’s going to remove the vitreous from her eye. The vitreous is the clear “jelly” in the center of the eye. They need to do this as the first step in addressing the high pressure in her eye. This would be the left, only functioning eye she has.
This may disrupt the minimal vision she has remaining, but we’re not sure until we find out from her after the surgery. Not doing this, and then a follow-on surgery to add a pressure reducing valve in her eye will result in the slow death of the retina and leave her completely blind. And while she doesn’t have much vision at all, some vision is better than no vision.
I was glad they had a chance to go to the pool today at Aditi’s house because my daughter won’t be able to swim for two weeks after the surgery. If we have a second surgery two weeks later, she will have a further two weeks without swimming—and that puts us mighty tight with our sailing trip at the start of July.
The Big Boy Update: My son has been adjusting well to the new screen time schedule. On the whole, it looks like he’s going to get a lot more screen time than before. But the catch is he has to earn it. We set it up so he could easily earn a good bit of it, while marking some things as, “bonus” so he wouldn’t be upset if he didn’t get those blocks of time but instead happy for earning extra. As predicted (by my husband and me) he’s electing not to do a good bit of the bonus items which means he’s earning a lot less screen time per day. He’s not counting though so he’s been happy with things. He also is restricted to redeeming earned screen time to certain hours of each day. This has also worked out better than expected. He looks forward to the upcoming time and when it’s up, there is no arguing about how much time he’s used.
The Tiny Girl Chronicles: My daughter was in the dog pen with the dog last night, which looked like this:
She suddenly went into a full conversation about being grateful. Fortunately I was at the computer at the time and got most of it written down. She was quite passionate about it. Here’s what she said: "I’m grateful for air, water, food and clothes and shelter. Matisse already has her clothes on...every day. And I’m also grateful because we have not only needs, we have wants. We have lots of things. Still, it seems sad, I really wanted to give a poor man money but then the light turned green and we had to go. Let’s say we had fifteen marshmallows and I got three of them. Do you know what I’d say? At least I got three of them, because some people don’t get any marshmallows."
Friday, May 31, 2019
Toucan Sam
My children like the cereal, Froot Loops. “Froot” instead of “Fruit” probably because there isn’t a shred of actual fruit in the brightly colored rings of sugary goodness. We try to have the children eat healthful foods, but we’re not militant about it and, to be sure, we're most likely more permissive than a lot of parents on what we allow them to have. I’ll get off my soapbox though and get to the topic of this post, which has nothing really to do with the cereal and more to do with sidewalk art.
When I was young, one of my good friends lived down the street from me. His parents and my parents were and still are best friends. He was four years older than I was which meant he knew pretty much everything, or so it seemed to me. We had our own friends sets, but we played together from time to time, especially if our parents were getting together for dinner or other social event.
Throughout my childhood, I don’t remember ever having sidewalk chalk. I don’t think it had been invented yet (or envisioned and subsequently marketed). The only chalk I’d ever seen were the white or yellow sticks at my school or in the college classrooms in which my mother taught math courses. Back then, unlike today, there was no such thing as rainbow-colored jumbo-sized chalk, sold in 96 quantity boxes at a price point such that the entire driveway could be colored without eliciting money-wasting comments from parents.
It was different when I was a child. We did have something that was in plentiful supply and had a price point of “free” though. That is, provided you had pine trees close at hand, which we did. All you needed to do was break off a reasonably thick section of bark. You could then hold it in your hand so that the edge of the bark was pointing down towards the concrete and by pressing down and dragging, you could leave a solid, rust brown line with ease.
Thicker pieces of bark left thicker marks, whereas a thin section of bark could do detail work. You could quickly shade in things with the flat side of a large chunk prised from an unsuspecting tree. I remember using bark for everything we ever drew on the driveway as a child. We made hopscotch grids which over time became more complex to the point they took up the entire length of the driveway, save for the cars parked towards the house. There was the game Four Square, one of my favorites, which inevitably involved accusing someone of unfair play tactics thus ending the game in favor of another activity with rules less prone to interpretation.
We also used the driveway as a canvas, on to which we would draw pictures. I have never been good at two-dimensional art. I suppose I lack both the skill or the interest in improving said skill and as such, to this day I have only one thing I draw well in two-dimensions: an elephant from behind squirting water from its trunk. And while this might sound complex, trust me, it is neither complex nor impressive.
It was this artwork feature of out bark usage that had me thinking about a day from my childhood the other morning as I emptied Froot Loops into a bowl for one of the children’s breakfast. My good friend from childhood, Richard, had been over at my house that day. We had been doing something or other, I’m not sure what, possibly jumping on the pogo stick seeing who could get the most hops before falling off. Or maybe that’s what I was doing because Richard was at work with some bark drawing something so large it was nearly as large as the footprint of my mother’s car.
It wasn’t clear what he was doing until he got to the head, and then it was unmistakeable. He had drawn what you’d call, if you’re from the South, “a spitting image” of Toucan Sam. I’m not joking here. I had no idea Richard could draw so well but this Toucan Sam was exceptional. It stayed on the driveway for days. I would look at it from the front porch in the morning and check to see if it was still there when I got home form school. It had a long life but was eventually lost to rain.
I’m not in contact with many of my friends from childhood, but Richard and I are still friends. In just over a month’s time we’re going with him and his family on an ocean sailing adventure. They all know how to sail. Our family has a total of zero sailing experience among us. They're a brave bunch, no?
The Big Boy Update: To see if I could get my son interested in audio books I casually put on The Wizard of Oz two weeks ago on the ride to school. He is now completely hooked. Every time he gets into the car he asks me to put the book back on. It’s not just one book; there are over seventy hours in the entire book collection, which was available from Audible for ninety-nine cents. Right now, since his screen time window hasn’t started for the evening, he’s sitting in the kitchen having Alexa play the audio book for him. Dorothy just got back to Kansas, ending the story that parallels the movie. He’s an hour into the next book already, balancing coins on their sides while he listens.
The Tiny Girl Chronicles: Even though my daughter can’t see much at all anymore, she still enjoys writing things. It’s very, very hard to tell what she’s written and it makes her a little sad I think when she excitedly gives you something she’s written, asks you to read it and you can’t even pick out a single word because she doesn’t have a good sense of letter spacing and writes her letters on top of each other both vertically and horizontally. So I gave her a tip. I taught her how to grid fold a piece of paper. She liked making fans so she already had part of the skill. I’m trying to set her up for accurate folding so we can do some origami, which I think she would enjoy very much. For writing though, I showed her how to make a grid on the paper and then told her to write one letter in each block of the grid, leaving a block blank to indicate spaces between words. This was in her backpack yesterday. I can tell it says “I love Madison”. This is the best spacing I’ve seen in her writing in a long while.
When I was young, one of my good friends lived down the street from me. His parents and my parents were and still are best friends. He was four years older than I was which meant he knew pretty much everything, or so it seemed to me. We had our own friends sets, but we played together from time to time, especially if our parents were getting together for dinner or other social event.
Throughout my childhood, I don’t remember ever having sidewalk chalk. I don’t think it had been invented yet (or envisioned and subsequently marketed). The only chalk I’d ever seen were the white or yellow sticks at my school or in the college classrooms in which my mother taught math courses. Back then, unlike today, there was no such thing as rainbow-colored jumbo-sized chalk, sold in 96 quantity boxes at a price point such that the entire driveway could be colored without eliciting money-wasting comments from parents.
It was different when I was a child. We did have something that was in plentiful supply and had a price point of “free” though. That is, provided you had pine trees close at hand, which we did. All you needed to do was break off a reasonably thick section of bark. You could then hold it in your hand so that the edge of the bark was pointing down towards the concrete and by pressing down and dragging, you could leave a solid, rust brown line with ease.
Thicker pieces of bark left thicker marks, whereas a thin section of bark could do detail work. You could quickly shade in things with the flat side of a large chunk prised from an unsuspecting tree. I remember using bark for everything we ever drew on the driveway as a child. We made hopscotch grids which over time became more complex to the point they took up the entire length of the driveway, save for the cars parked towards the house. There was the game Four Square, one of my favorites, which inevitably involved accusing someone of unfair play tactics thus ending the game in favor of another activity with rules less prone to interpretation.
We also used the driveway as a canvas, on to which we would draw pictures. I have never been good at two-dimensional art. I suppose I lack both the skill or the interest in improving said skill and as such, to this day I have only one thing I draw well in two-dimensions: an elephant from behind squirting water from its trunk. And while this might sound complex, trust me, it is neither complex nor impressive.
It was this artwork feature of out bark usage that had me thinking about a day from my childhood the other morning as I emptied Froot Loops into a bowl for one of the children’s breakfast. My good friend from childhood, Richard, had been over at my house that day. We had been doing something or other, I’m not sure what, possibly jumping on the pogo stick seeing who could get the most hops before falling off. Or maybe that’s what I was doing because Richard was at work with some bark drawing something so large it was nearly as large as the footprint of my mother’s car.
It wasn’t clear what he was doing until he got to the head, and then it was unmistakeable. He had drawn what you’d call, if you’re from the South, “a spitting image” of Toucan Sam. I’m not joking here. I had no idea Richard could draw so well but this Toucan Sam was exceptional. It stayed on the driveway for days. I would look at it from the front porch in the morning and check to see if it was still there when I got home form school. It had a long life but was eventually lost to rain.
I’m not in contact with many of my friends from childhood, but Richard and I are still friends. In just over a month’s time we’re going with him and his family on an ocean sailing adventure. They all know how to sail. Our family has a total of zero sailing experience among us. They're a brave bunch, no?
The Big Boy Update: To see if I could get my son interested in audio books I casually put on The Wizard of Oz two weeks ago on the ride to school. He is now completely hooked. Every time he gets into the car he asks me to put the book back on. It’s not just one book; there are over seventy hours in the entire book collection, which was available from Audible for ninety-nine cents. Right now, since his screen time window hasn’t started for the evening, he’s sitting in the kitchen having Alexa play the audio book for him. Dorothy just got back to Kansas, ending the story that parallels the movie. He’s an hour into the next book already, balancing coins on their sides while he listens.
The Tiny Girl Chronicles: Even though my daughter can’t see much at all anymore, she still enjoys writing things. It’s very, very hard to tell what she’s written and it makes her a little sad I think when she excitedly gives you something she’s written, asks you to read it and you can’t even pick out a single word because she doesn’t have a good sense of letter spacing and writes her letters on top of each other both vertically and horizontally. So I gave her a tip. I taught her how to grid fold a piece of paper. She liked making fans so she already had part of the skill. I’m trying to set her up for accurate folding so we can do some origami, which I think she would enjoy very much. For writing though, I showed her how to make a grid on the paper and then told her to write one letter in each block of the grid, leaving a block blank to indicate spaces between words. This was in her backpack yesterday. I can tell it says “I love Madison”. This is the best spacing I’ve seen in her writing in a long while.
Thursday, May 30, 2019
Sighted Guide
I went to school with my daughter this morning to attend her orientation and mobility lesson with Mr. Adam. He goes to the various schools in the area that have VI students and spends an hour with each one of them per week. He’s taught my daughter how to use her cane effectively, but that’s only the start of what he’s teaching her.
They go on field trips most weeks to some location close to the school. They have been planning a trip to the pet store, what with my daughter wanting to work in one when she gets older, but we didn’t have the time today so we went to Wendy’s instead which was just a few blocks away.
We drove over and parked at the pharmacy at one end of the shopping strip. The Wendy’s was at the other end and out of sight from where we parked. My daughter got out and oriented herself at the back of the car. The next part was hard. It was hard to get to Wendys. It was hard, because she couldn’t see anything and didn’t know where it was.
To get there as a sighted person I would have seen it in the distance as we pulled in, walked around the pharmacy through the parking lot, curbs, avoiding the other cars. Then I would have figured out the best way to traverse the parking lot space including the berms, curbs, parking concrete space markers, shopping carts, lamp posts, entry way car paths, medians, etc. until I got to the restaurant where I would walk straight to the door, open it and go in.
But she’s blind and she knows none of this. This is a good point to put in a plug for sighted guide dogs. How do you tell a dog to take you to Wendy’s? “Dog, go to Wendy’s” doesn’t work. Or even if the dog knew how to get there from prior trips, what if you want to go to the Verison store in the same shopping area? The dog can’t read and doesn’t know which store you mean if it’s someplace you’ve never been there before.
That’s why you, as a blind person, have to be able to navigate successfully for yourself before you’re eligible to revive a guide dog. The dog keeps you safe, it’s not an autonomous self-driving GPS creature. So you have to learn how to get places yourself.
What we did, or rather what my daughter did, was get there using audio and sensory clues. She knew that from the back of my car she needed to head towards the loudest vehicle sounds of quickly moving cars about fifteen cars away from the spot I’d parked and climb up a set of stairs to the sidewalk. She couldn’t trail along the backs of the other cars to get to the curb because the parking lot was almost empty. She had to keep walking straight and not trail off to the left or the right. And that’s easy to do when you’re blindfolded from what I’ve experienced.
She got to the curb and heard the cars forwards and above her as the road was higher up. She knew there was a flight of stairs to the right from prior trips. She used cane techniques to climb the irregular paved stairs and then knew to turn left towards that loud traffic. When her cane dropped off the edge of the curb (car sounds very loud and close now) she knew to turn left again and walk parallel with the traffic.
This was impressive to see her do and a bit scary because of what happened next. She got to the pavement opening where the entry and exit ways of the shopping strip. She waited to hear for cars coming into or out and then moved forward. She made it to the center concrete island between the lanes fine but the second half of the pavement she unknowingly veered to the right, missing the edge of the sidewalk and started moving into the street.
This is where a guide dog would be useful because the dog would have kept her on path, even if the dog didn’t know where specifically she was ultimately headed. She was never in danger because Mr. Adam had her stop and assess what had happened. After that the rest of the walk was much the same, save for I don’t know how in the world she’d know where she was going unless she’d been there before, via that same route (which in this case, she had.)
We got to the Wendy’s parking lot and via some audio cues and, apparently, she could see where the building was (which I didn’t know she could see), she headed to the door. That’s another thing I don’t know how you’d know without help—you’re at a busy fast food restaurant with cars all over the place, including the drive through cars circling around the building. Where is the door? You can’t walk all around the building until you find a door handle.
When we got there the building was locked. So what do you do now? I could see the store hours that showed they didn’t open until ten (we were five minutes early). I could look inside and see someone preparing to open the store. If you’re blind do you just wait, hopeful that there isn’t a sign taped to the inside of the door saying, “water main broken, closed until flood damage can be repaired”?
In this case, we waited for five minutes and then all had Frosties before heading back to school. That was the best part of the trip for my daughter. Here’s a map of the path she took. The place where the red line breaks is where she veered off into the street.
I learned a lot about “sighted guide” today as well. The term, “sighted guide” describes when a sighted person guides a blind person around. I’ve been doing this, but I needed some more formal training. The beginning was funny as my daughter grasped my wrist and I started walking forward with her. She was using her cane as well. After a bit Mr. Adam said, “what she’s doing is something called ‘untrusted sighted guide’”. I laughed because I thought his meant my daughter didn’t trust me.
It didn’t though, she just hadn’t stopped using her cane. A trusted sighted guide is someone who knows how to safely guide a blind person, unlike, say some of my daughter’s friends who will gladly grab her hand and drag her along with them, not realizing she might trip over a root or not see a curb. In those cases or when a blind person has to ask help from someone who is unknown to them, the blind person would still use their cane to give them the additional information.
In trusted sighted guide the blind person would tuck their cane up against their body and let the sighted person lead. There are lots of rules for how to do this safely given different situations like opening doors, traversing narrow spaces and finding stadium seats. I learned the basics today.
The Big Boy Update: My son told Liz today he was done with OT until August. Liz said she’d talk to me about that. He’s almost correct though with all the travel Liz and we have over the summer.
The Tiny Girl Chronicles: My daughter got shy (anxious) when I got to school today with Mr. Adam. She wasn’t so sure she wanted to have me there I think. She warmed up to it though when she realized she was going to get a Frostie at Wendy’s.
They go on field trips most weeks to some location close to the school. They have been planning a trip to the pet store, what with my daughter wanting to work in one when she gets older, but we didn’t have the time today so we went to Wendy’s instead which was just a few blocks away.
We drove over and parked at the pharmacy at one end of the shopping strip. The Wendy’s was at the other end and out of sight from where we parked. My daughter got out and oriented herself at the back of the car. The next part was hard. It was hard to get to Wendys. It was hard, because she couldn’t see anything and didn’t know where it was.
To get there as a sighted person I would have seen it in the distance as we pulled in, walked around the pharmacy through the parking lot, curbs, avoiding the other cars. Then I would have figured out the best way to traverse the parking lot space including the berms, curbs, parking concrete space markers, shopping carts, lamp posts, entry way car paths, medians, etc. until I got to the restaurant where I would walk straight to the door, open it and go in.
But she’s blind and she knows none of this. This is a good point to put in a plug for sighted guide dogs. How do you tell a dog to take you to Wendy’s? “Dog, go to Wendy’s” doesn’t work. Or even if the dog knew how to get there from prior trips, what if you want to go to the Verison store in the same shopping area? The dog can’t read and doesn’t know which store you mean if it’s someplace you’ve never been there before.
That’s why you, as a blind person, have to be able to navigate successfully for yourself before you’re eligible to revive a guide dog. The dog keeps you safe, it’s not an autonomous self-driving GPS creature. So you have to learn how to get places yourself.
What we did, or rather what my daughter did, was get there using audio and sensory clues. She knew that from the back of my car she needed to head towards the loudest vehicle sounds of quickly moving cars about fifteen cars away from the spot I’d parked and climb up a set of stairs to the sidewalk. She couldn’t trail along the backs of the other cars to get to the curb because the parking lot was almost empty. She had to keep walking straight and not trail off to the left or the right. And that’s easy to do when you’re blindfolded from what I’ve experienced.
She got to the curb and heard the cars forwards and above her as the road was higher up. She knew there was a flight of stairs to the right from prior trips. She used cane techniques to climb the irregular paved stairs and then knew to turn left towards that loud traffic. When her cane dropped off the edge of the curb (car sounds very loud and close now) she knew to turn left again and walk parallel with the traffic.
This was impressive to see her do and a bit scary because of what happened next. She got to the pavement opening where the entry and exit ways of the shopping strip. She waited to hear for cars coming into or out and then moved forward. She made it to the center concrete island between the lanes fine but the second half of the pavement she unknowingly veered to the right, missing the edge of the sidewalk and started moving into the street.
This is where a guide dog would be useful because the dog would have kept her on path, even if the dog didn’t know where specifically she was ultimately headed. She was never in danger because Mr. Adam had her stop and assess what had happened. After that the rest of the walk was much the same, save for I don’t know how in the world she’d know where she was going unless she’d been there before, via that same route (which in this case, she had.)
We got to the Wendy’s parking lot and via some audio cues and, apparently, she could see where the building was (which I didn’t know she could see), she headed to the door. That’s another thing I don’t know how you’d know without help—you’re at a busy fast food restaurant with cars all over the place, including the drive through cars circling around the building. Where is the door? You can’t walk all around the building until you find a door handle.
When we got there the building was locked. So what do you do now? I could see the store hours that showed they didn’t open until ten (we were five minutes early). I could look inside and see someone preparing to open the store. If you’re blind do you just wait, hopeful that there isn’t a sign taped to the inside of the door saying, “water main broken, closed until flood damage can be repaired”?
In this case, we waited for five minutes and then all had Frosties before heading back to school. That was the best part of the trip for my daughter. Here’s a map of the path she took. The place where the red line breaks is where she veered off into the street.
I learned a lot about “sighted guide” today as well. The term, “sighted guide” describes when a sighted person guides a blind person around. I’ve been doing this, but I needed some more formal training. The beginning was funny as my daughter grasped my wrist and I started walking forward with her. She was using her cane as well. After a bit Mr. Adam said, “what she’s doing is something called ‘untrusted sighted guide’”. I laughed because I thought his meant my daughter didn’t trust me.
It didn’t though, she just hadn’t stopped using her cane. A trusted sighted guide is someone who knows how to safely guide a blind person, unlike, say some of my daughter’s friends who will gladly grab her hand and drag her along with them, not realizing she might trip over a root or not see a curb. In those cases or when a blind person has to ask help from someone who is unknown to them, the blind person would still use their cane to give them the additional information.
In trusted sighted guide the blind person would tuck their cane up against their body and let the sighted person lead. There are lots of rules for how to do this safely given different situations like opening doors, traversing narrow spaces and finding stadium seats. I learned the basics today.
The Big Boy Update: My son told Liz today he was done with OT until August. Liz said she’d talk to me about that. He’s almost correct though with all the travel Liz and we have over the summer.
The Tiny Girl Chronicles: My daughter got shy (anxious) when I got to school today with Mr. Adam. She wasn’t so sure she wanted to have me there I think. She warmed up to it though when she realized she was going to get a Frostie at Wendy’s.
Wednesday, May 29, 2019
The Longest Song
While I was at a board meeting last night my daughter was writing a song. Or rather modifying an existing song. I knew that tune when I read the title, “The Twelve Good Puppy Days of Christmas”. She didn’t shortcut the song, like I’m going to do in this blog post, she wrote out every single word of the song, repeating each day again as she counted down in each verse. The song totaled seven pages, all fully brailled.
The twelve days were:
- Twelve puppy beds
- Eleven puppy sticks
- Ten new toys
- Nine bowls of water
- Eight puppy kisses
- Seven puppy cages
- Six cool vents
- Five golden collars
- Four tug toys
- Three bowls of food
- Two puppy treats
- And a bone in a puppy dog tree
She wanted to take the song to school to show her VI teacher. When she came home after school she told us Ms. Sample liked the song so much she wanted to keep it. Which was fine with my daughter, she just started typing the song all over again so she would have a copy here.
When I checked my daughter’s backpack tonight for work and to refill her snack container I looked in the VI communication book Ms. Sample and I use to message us back and forth (old school style via handwriting on paper instead of email). Ms. Sample told me my daughter had sung the entire song in the VI room today and had received a round of applause and cheers from the teachers and other students in the room when she was done.
The Big Boy Update: We went to a party this evening for a family who is moving away. My son jumped right in, playing with the other children even though he didn’t know them. A while later the boys had left, leaving only some girls, who were playing with dolls on a table in the back. My son had no problem with this either, but I could tell he’d put his own spin on it when I heard one of the girls talking about where they should put the Infinity Stone. My son can work Avengers into just about anything.
The Tiny Girl Chronicles: My daughter asked me, “when I talk to Alexa, does someone have to be there, on the internet?” I think she was envisioning someone listening in to our questions and sending answers back. I told her no, it was handled automatically. Then she said, " oh, so that’s why I can talk to Alexa at night."
The twelve days were:
- Twelve puppy beds
- Eleven puppy sticks
- Ten new toys
- Nine bowls of water
- Eight puppy kisses
- Seven puppy cages
- Six cool vents
- Five golden collars
- Four tug toys
- Three bowls of food
- Two puppy treats
- And a bone in a puppy dog tree
She wanted to take the song to school to show her VI teacher. When she came home after school she told us Ms. Sample liked the song so much she wanted to keep it. Which was fine with my daughter, she just started typing the song all over again so she would have a copy here.
When I checked my daughter’s backpack tonight for work and to refill her snack container I looked in the VI communication book Ms. Sample and I use to message us back and forth (old school style via handwriting on paper instead of email). Ms. Sample told me my daughter had sung the entire song in the VI room today and had received a round of applause and cheers from the teachers and other students in the room when she was done.
The Big Boy Update: We went to a party this evening for a family who is moving away. My son jumped right in, playing with the other children even though he didn’t know them. A while later the boys had left, leaving only some girls, who were playing with dolls on a table in the back. My son had no problem with this either, but I could tell he’d put his own spin on it when I heard one of the girls talking about where they should put the Infinity Stone. My son can work Avengers into just about anything.
The Tiny Girl Chronicles: My daughter asked me, “when I talk to Alexa, does someone have to be there, on the internet?” I think she was envisioning someone listening in to our questions and sending answers back. I told her no, it was handled automatically. Then she said, " oh, so that’s why I can talk to Alexa at night."
Tuesday, May 28, 2019
Not the Ice Cream Truck
My daughter and I were playing Monopoly yesterday afternoon when I heard a far off melody. I listened and then jumped out of the chair saying, “is that the ice cream truck?” My children love when an ice cream truck comes by. It doesn’t happen often, but when it does it’s like Christmas and Halloween combined from an excitement level.
As I headed to the door my daughter yelled out, “Greyson, the Ice Cream Truck is here!” He ran up from the basement by the time I’d gone outside, where I couldn’t hear the sound anymore. I went back in to find both of my children trying to get out the door. I told them I didn’t think it was the ice cream truck after all. My son was certain though and headed out. I told him if he heard it to let us know.
My daughter and I heard that far off music again. I opened the door, stepped out and the music faded. I came back in and it got louder. I said to my daughter, “it’s coming from inside.” A dawning expression came over her face as she listened. She said, “oh, I know what it is, it’s my watch.”
She didn’t have her watch on on Memorial Day as we were just spending time at home. Mimi had called her twice on it. We got the watch and my daughter answered the call the next time it rang. After answering she said, “Mimi, can I call you back? We’re playing Monopoly."
The Big Boy Update: My son came home from school today and was a little bit disregulated. Well, he was actually completely and totally unable to control his emotions. I was lying down and didn’t notice when things got quiet. I had fallen asleep when a while later he came into the room, very happy and excited. He woke me up (children always wake sleeping parents up without a second though it would seem) and told me he had made lemonade with dad. I mumbled something sleepily and he gently put a piece of paper in my hand saying, “this is the recipe, I’ll read it to you when you wake up.” I found him first thing when I woke up and he told me about the lemonade, saying they’d saved some for me.
The Tiny Girl Chronicles: My daughter told me the other day, "I explained to Madison what passive aggressive means.” I couldn’t help but laugh as she told me about how she had shared some of her dinner of SpaghettiOs with Madison, who had never had them and thought they looked good. She had said, “I sure wish I had some more SpaghettiOs.”
As I headed to the door my daughter yelled out, “Greyson, the Ice Cream Truck is here!” He ran up from the basement by the time I’d gone outside, where I couldn’t hear the sound anymore. I went back in to find both of my children trying to get out the door. I told them I didn’t think it was the ice cream truck after all. My son was certain though and headed out. I told him if he heard it to let us know.
My daughter and I heard that far off music again. I opened the door, stepped out and the music faded. I came back in and it got louder. I said to my daughter, “it’s coming from inside.” A dawning expression came over her face as she listened. She said, “oh, I know what it is, it’s my watch.”
She didn’t have her watch on on Memorial Day as we were just spending time at home. Mimi had called her twice on it. We got the watch and my daughter answered the call the next time it rang. After answering she said, “Mimi, can I call you back? We’re playing Monopoly."
The Big Boy Update: My son came home from school today and was a little bit disregulated. Well, he was actually completely and totally unable to control his emotions. I was lying down and didn’t notice when things got quiet. I had fallen asleep when a while later he came into the room, very happy and excited. He woke me up (children always wake sleeping parents up without a second though it would seem) and told me he had made lemonade with dad. I mumbled something sleepily and he gently put a piece of paper in my hand saying, “this is the recipe, I’ll read it to you when you wake up.” I found him first thing when I woke up and he told me about the lemonade, saying they’d saved some for me.
The Tiny Girl Chronicles: My daughter told me the other day, "I explained to Madison what passive aggressive means.” I couldn’t help but laugh as she told me about how she had shared some of her dinner of SpaghettiOs with Madison, who had never had them and thought they looked good. She had said, “I sure wish I had some more SpaghettiOs.”
Monday, May 27, 2019
A Bitter Loss
I lost at Monopoly. I threw a tantrum. I cried. I dashed the board and all the pieces across the room. Okay, I didn’t. It was very sweet what my daughter did, though. We have been playing the same game of Monopoly for three days now. We’d take breaks and then come back to the game hours later. That, coupled with it being my daughter’s first exposure to Monopoly and the added complexity of her lack of vision made it a longer game than it might otherwise have been.
It became apparent I wasn’t going to be able to recover from landing on several properties of hers with hotels in a row. She didn’t want the game to be over. She came up with this idea all on her own, telling me, “you give me one dollar and I’ll give you this seven hundred dollars.” I told her it was such a nice thing for her to offer, but it wasn’t going to help me recover from the situation I was in, that I couldn’t get back to a point where the game would be competitive.
I also told her it wasn’t fun for the losing person to hang on, barely above bankruptcy, just to have the game last longer. I said I’d rather finish this game and start a new one. We hadn’t even purchased all the properties from the bank and each only had a few we were able ti improve with houses because we had the full set. I didn’t mind being in a losing position, but I wanted her to give her an idea that it might not be fun if she was on the losing side, possibly just wanting the game to be over, knowing she couldn’t possibly win. She understood. I think she mostly just wanted to be playing in some fashion or another because she’d had such a good time playing all weekend.
After she won and I told my daughter congratulations and she took being the winner with grace. I’m not sure it would have gone down the same way if she’d been losing, but we’ll find out more on that in future games I’m sure.
The modifications to this version of the game for visually impaired and blind people is extensive. It enabled my daughter to play the game both independently and successfully. We added some additional modifications of our own that she and I came up with while we played to help her more quickly discern different items in the game.
First, the board. It’s a standard Monopoly board glued onto a thicker backing. On top of that is a clear moulded sheet with braille and raised demarcation lines to separate the different areas of the board.
Each space on the board is separated by with raised lines. Inside each board space is the braille indicating what the space is. The Jail space even has two areas, one for visiting and one for incarcerated players. The dice are larger tactile versions with the faces inset and easily discernible pips on each side of the die. In order to keep track of the dice she and I rolled them within the Chance and Community Chest raised boxes on the board.
There are two different spaces for the Chance and Community Chest cards. The traditional-sized spots we used for rolling the dice. We put the included large print/braille versions of the cards in the bigger areas shown above as orange and yellow cards.
These bigger cards look like this:
My daughter can pick up one of these cards and read the braille easily, but we decided to add some additional indicators for orientation purposes. I clipped off the top right corner of each card. This is commonly done with lots of things written in braille. It immediately tells you how to orient the card. I added a corner stripe of tactile tape (very similar to blue painters tape) to the top of each card. Top right for Community Chest and top left for Chance. After we made these changes my daughter could orient the card quickly as well as determine how to place it back in the bottom of the correct stack afterwards.
Property cards were our next modification. I’d never thought about it before but there is a lot of text on a property card. The ones in this set are about four times the size of the traditional ones.
We take so much for granted with sight. For instance, if I had the four properties in the picture above and someone had landed on my Indiana Avenue property on which I happen to have three houses I would determine the rent by: glancing at my cards for the color red, scanning down the text on the card looking for the number three and then jump over to the end of the line to get the amount $700. I would read very little in the whole process and I’d know the rent amount in less than three seconds elapsed time.
When you’re blind you can’t do that. A lot of organization and memory helps, and my daughter has good skills in both, but that organization is only at a seven-year-old level. She has to take the cards and look through them until she finds the correct deed. She then reads the braille line by line until she gets to the correct rent. She does do some skipping, but it’s a significantly slower process since her entire imput devices are the tips of her fingers.
My daughter pointed out an issue she was having with the property deed cards. She couldn’t tell the difference between the front and the back. I never realized it before, what with the scanning and all, but there are a lot of words on those cards. There’s more text on the back for when the property is mortgaged. She reads double spaced braille at school. These cards are single spaced with braille on both sides. And while the single spacing wasn’t a problem for her, we came up with a way for her to quickly tell the front of the card with proper orientation by putting little brown felt dots on the top right corners. After that, she could even tell quickly which ones of her properties were mortgaged because the felt dot wasn’t on the up side since the property had been turned over indicating it was mortgaged.
Money moves around quickly in Monopoly with far more bills exchanging hands with players and the bank than I’d really paid attention to before. The money included in this modified version of the game was on a stronger card stock. Each bill had been each individually braille with the monetary denomination. But my daughter was still taking time to figure out how each bill should be oriented. Raised braille dots indicated the up side, but then there’s a rotational orientation of 180 degrees. And here’s the thing—braille upside down can still read like braille but is confusing because the contractions don’t make sense. I’ve done this too many times, trying to figure out what I was reading only to realize I had the paper upside down.
So we chopped off the top right corner of every bill using a corner punch so everything would be consistent (I do so like accuracy). When we were done with that it was easy to orient and organize the bills. I actually liked this from a sighted perspective as well. Rotated bills in a pack stood out because the top right corner stuck out. It made being the banker’s job easier if you’re persnickety, which I am.
That took care of most things. My daughter would roll the dice for each of us, rotate the board around until she found her or my token and then move it the proper number of spaces, using the raised plastic lines to count spaces. She loved rotating the board, feeling the braille and figuring out where we’d landed or were going. But this posed another problem—houses.
Our tokens mostly stayed in their space, even when she brushed them with her arm, but once we got into houses, they were going to go everywhere, I was pretty sure. How could we lock them down so they didn’t move? I’d recently gotten some “sticky dots” as my daughter calls them, for her to use in her craft endeavors. I’d ordered three kinds: low tack, medium tack and high tack.
In typical fashion, I ordered a commercial-sized lot of each because hey, you never know when you’re going to need six thousand glue spots, right? So we tried all three sticky strengths. The high tack was great insofar as it soundly held the house or hotel on the plastic sheet, but it was annoying to disengage from the house board when we upgraded to a hotel (or when I had to sell houses to pay for my daughter's high-priced hotel rent on Boardwalk).
We tried the low-tack next but that was the opposite problem with the houses easily pulled off. So we went with the baby bear porridge option and used the middle tack glue spots. Easy to put on, easy to remove. The fact that the board is covered in a thick sheet of formed clear plastic made this the perfect solution as it didn’t damage the board at all.
And that, my friends, is what we’ve been doing over the Memorial Day weekend. Lots of Monopoly. My son was busy and didn’t get to join in at the start of the game with us. I’m rather glad though because now his sister knows how to do something he doesn’t and can help to teach him. Any time she can be a leader and help others gives her a confidence boost.
I was hoping to take this Monopoly on our upcoming sailing trip in July, but the board is too big to take on as it doesn’t fold and is too wide to fit in a suitcase. It would also take up the entire table we’ll be using for eating. So we’re thinking about alternatives for the board that will be more compact. I’m sure my daughter will have some good ideas on that front, she always does.
The Big Boy Update: As of tomorrow, my son has an entire new rewards program to earn screen time. I think we positioned it well and had him participate in the process. It’s more limiting, while giving him the opportunity to potentially earn more time by doing lots of things at home we’ve been wanting him to start doing. Thanks to Aunt A for her advice on what they’re doing at home there, we used that as inspiration, copying a good bit of their plan.
The Tiny Girl Chronicles: My daughter is quite honest and a fair player, even if she doesn’t like to lose. When I wasn’t available to play Monopoly this weekend she would play for the both of us.
Some of the time she would play with her friend, Madison, who would play in my stead. Madison had never played before, so the two of them tried to make the best judgement calls on what to do when they weren’t sure what the rules were. After the first day she came in and told me I’d landed on her railroad and owed $100 in rent (she landed on three railroads early in the game). She and Madison had dutifully collected the $100 from my money and had given it to the bank. When I told her the rent went to her, not the bank, she was excited. Over the rest of the weekend, any time she played without me she would come in and give me an update on what had been happening. She really has enjoyed playing, even when I haven’t been there to play with her.
It became apparent I wasn’t going to be able to recover from landing on several properties of hers with hotels in a row. She didn’t want the game to be over. She came up with this idea all on her own, telling me, “you give me one dollar and I’ll give you this seven hundred dollars.” I told her it was such a nice thing for her to offer, but it wasn’t going to help me recover from the situation I was in, that I couldn’t get back to a point where the game would be competitive.
I also told her it wasn’t fun for the losing person to hang on, barely above bankruptcy, just to have the game last longer. I said I’d rather finish this game and start a new one. We hadn’t even purchased all the properties from the bank and each only had a few we were able ti improve with houses because we had the full set. I didn’t mind being in a losing position, but I wanted her to give her an idea that it might not be fun if she was on the losing side, possibly just wanting the game to be over, knowing she couldn’t possibly win. She understood. I think she mostly just wanted to be playing in some fashion or another because she’d had such a good time playing all weekend.
After she won and I told my daughter congratulations and she took being the winner with grace. I’m not sure it would have gone down the same way if she’d been losing, but we’ll find out more on that in future games I’m sure.
The modifications to this version of the game for visually impaired and blind people is extensive. It enabled my daughter to play the game both independently and successfully. We added some additional modifications of our own that she and I came up with while we played to help her more quickly discern different items in the game.
First, the board. It’s a standard Monopoly board glued onto a thicker backing. On top of that is a clear moulded sheet with braille and raised demarcation lines to separate the different areas of the board.
Each space on the board is separated by with raised lines. Inside each board space is the braille indicating what the space is. The Jail space even has two areas, one for visiting and one for incarcerated players. The dice are larger tactile versions with the faces inset and easily discernible pips on each side of the die. In order to keep track of the dice she and I rolled them within the Chance and Community Chest raised boxes on the board.
There are two different spaces for the Chance and Community Chest cards. The traditional-sized spots we used for rolling the dice. We put the included large print/braille versions of the cards in the bigger areas shown above as orange and yellow cards.
These bigger cards look like this:
My daughter can pick up one of these cards and read the braille easily, but we decided to add some additional indicators for orientation purposes. I clipped off the top right corner of each card. This is commonly done with lots of things written in braille. It immediately tells you how to orient the card. I added a corner stripe of tactile tape (very similar to blue painters tape) to the top of each card. Top right for Community Chest and top left for Chance. After we made these changes my daughter could orient the card quickly as well as determine how to place it back in the bottom of the correct stack afterwards.
Property cards were our next modification. I’d never thought about it before but there is a lot of text on a property card. The ones in this set are about four times the size of the traditional ones.
We take so much for granted with sight. For instance, if I had the four properties in the picture above and someone had landed on my Indiana Avenue property on which I happen to have three houses I would determine the rent by: glancing at my cards for the color red, scanning down the text on the card looking for the number three and then jump over to the end of the line to get the amount $700. I would read very little in the whole process and I’d know the rent amount in less than three seconds elapsed time.
When you’re blind you can’t do that. A lot of organization and memory helps, and my daughter has good skills in both, but that organization is only at a seven-year-old level. She has to take the cards and look through them until she finds the correct deed. She then reads the braille line by line until she gets to the correct rent. She does do some skipping, but it’s a significantly slower process since her entire imput devices are the tips of her fingers.
My daughter pointed out an issue she was having with the property deed cards. She couldn’t tell the difference between the front and the back. I never realized it before, what with the scanning and all, but there are a lot of words on those cards. There’s more text on the back for when the property is mortgaged. She reads double spaced braille at school. These cards are single spaced with braille on both sides. And while the single spacing wasn’t a problem for her, we came up with a way for her to quickly tell the front of the card with proper orientation by putting little brown felt dots on the top right corners. After that, she could even tell quickly which ones of her properties were mortgaged because the felt dot wasn’t on the up side since the property had been turned over indicating it was mortgaged.
Money moves around quickly in Monopoly with far more bills exchanging hands with players and the bank than I’d really paid attention to before. The money included in this modified version of the game was on a stronger card stock. Each bill had been each individually braille with the monetary denomination. But my daughter was still taking time to figure out how each bill should be oriented. Raised braille dots indicated the up side, but then there’s a rotational orientation of 180 degrees. And here’s the thing—braille upside down can still read like braille but is confusing because the contractions don’t make sense. I’ve done this too many times, trying to figure out what I was reading only to realize I had the paper upside down.
So we chopped off the top right corner of every bill using a corner punch so everything would be consistent (I do so like accuracy). When we were done with that it was easy to orient and organize the bills. I actually liked this from a sighted perspective as well. Rotated bills in a pack stood out because the top right corner stuck out. It made being the banker’s job easier if you’re persnickety, which I am.
That took care of most things. My daughter would roll the dice for each of us, rotate the board around until she found her or my token and then move it the proper number of spaces, using the raised plastic lines to count spaces. She loved rotating the board, feeling the braille and figuring out where we’d landed or were going. But this posed another problem—houses.
Our tokens mostly stayed in their space, even when she brushed them with her arm, but once we got into houses, they were going to go everywhere, I was pretty sure. How could we lock them down so they didn’t move? I’d recently gotten some “sticky dots” as my daughter calls them, for her to use in her craft endeavors. I’d ordered three kinds: low tack, medium tack and high tack.
In typical fashion, I ordered a commercial-sized lot of each because hey, you never know when you’re going to need six thousand glue spots, right? So we tried all three sticky strengths. The high tack was great insofar as it soundly held the house or hotel on the plastic sheet, but it was annoying to disengage from the house board when we upgraded to a hotel (or when I had to sell houses to pay for my daughter's high-priced hotel rent on Boardwalk).
We tried the low-tack next but that was the opposite problem with the houses easily pulled off. So we went with the baby bear porridge option and used the middle tack glue spots. Easy to put on, easy to remove. The fact that the board is covered in a thick sheet of formed clear plastic made this the perfect solution as it didn’t damage the board at all.
And that, my friends, is what we’ve been doing over the Memorial Day weekend. Lots of Monopoly. My son was busy and didn’t get to join in at the start of the game with us. I’m rather glad though because now his sister knows how to do something he doesn’t and can help to teach him. Any time she can be a leader and help others gives her a confidence boost.
I was hoping to take this Monopoly on our upcoming sailing trip in July, but the board is too big to take on as it doesn’t fold and is too wide to fit in a suitcase. It would also take up the entire table we’ll be using for eating. So we’re thinking about alternatives for the board that will be more compact. I’m sure my daughter will have some good ideas on that front, she always does.
The Big Boy Update: As of tomorrow, my son has an entire new rewards program to earn screen time. I think we positioned it well and had him participate in the process. It’s more limiting, while giving him the opportunity to potentially earn more time by doing lots of things at home we’ve been wanting him to start doing. Thanks to Aunt A for her advice on what they’re doing at home there, we used that as inspiration, copying a good bit of their plan.
The Tiny Girl Chronicles: My daughter is quite honest and a fair player, even if she doesn’t like to lose. When I wasn’t available to play Monopoly this weekend she would play for the both of us.
Some of the time she would play with her friend, Madison, who would play in my stead. Madison had never played before, so the two of them tried to make the best judgement calls on what to do when they weren’t sure what the rules were. After the first day she came in and told me I’d landed on her railroad and owed $100 in rent (she landed on three railroads early in the game). She and Madison had dutifully collected the $100 from my money and had given it to the bank. When I told her the rent went to her, not the bank, she was excited. Over the rest of the weekend, any time she played without me she would come in and give me an update on what had been happening. She really has enjoyed playing, even when I haven’t been there to play with her.
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