My son has a peanut allergy. It’s not a bad one, but its annoying when it happens (to him). We keep Benadryl and Calagel in the car and from time to time have to use it. But it’s sometimes a mystery why he has a reaction. Sometime it isn’t immediate but whenever he reacts, he gets hives on his face in a few minutes and everything itches.
He has no breathing problems—never has. I asked him again tonight just to be sure. I asked, because he had a rather immediate reaction tonight to dinner dad made that had only a few ingredients. It was fresh red snapper fish from Whole Foods, lemon, salt, pepper and paprika. That’s it. But man did he react.
My son loves all kinds of fish and shellfish. Was it the red snapper? Something affected him for sure. He couldn’t eat dinner for about a half hour until the reaction calmed down. And then we fed him something other than red snapper…
The Big Boy Update: My son never gets upset when he has an allergic reaction. This time he was on the counter in the bathroom looking at his face, waiting to see if it broke out in hives. Then—when it did—he wanted me to take pictures of it so he could see how much better it was ten minutes later.
The Tiny Girl Chronicles: My daughter came in from school to find me on the phone with my best friend. It’s a good thing I was finishing the call because my daughter came bouncing in to the pool, rolling on her purple yoga ball, saying, “mama, I have no patients!”
Tuesday, July 31, 2018
Monday, July 30, 2018
Force of Habit
This morning I left the house before the children were awake for my mammogram appointment. I had to plan for this appointment last night. I was lying in bed, almost asleep, and I realized I’d forgotten something important about this morning so I got up and made sure I had it done.
What had I done? I’d taken the key to my care out of my purse. I did this because if I hadn’t, I probably would have driven off in my car in the morning, forgetting I needed to take my husband’s car so he could drop my car off for service while I was at the dentist’s office (after the mammogram stop).
It’s just a force of habit. That, or I just really like my car. I’ve done it before—left the house, been to school to drop the children off when my husband calls me saying I’ve taken the wrong car. But this time I was going to be prepared. I had plans. If I didn’t have the key to my car in my purse when I walked out to the garage in the morning I would hopefully remember I was suppose to be in the other car.
And it worked too. I walked into the garage, hit my garage door button and started walking towards the car door when I remembered. Creature of habit, or at least with my car I am.
The Big Boy Update: My son is having some screen separation issues. He’s having an opportunity to do more screen time than he typically would have as it’s summer. He’s going to have a few days off to see if he can reset some.
The Tiny Girl Chronicles: My daughter is over the fear of the eye pressure tool. Which is a big relief since we had to take her to the OR recently to get an accurate pressure. Today I think Dr. Grace must have checked it fifty times in one eye and more in the other. My daughter’s only difficulty was in trying to look forward and not roll her eyes. Her right eye is rolled almost all the time so getting to a spot where you can see pupil is difficult. She didn’t seem to mind the pressure check at all though, which is good as it makes things a lot easier since she’s had and will continue to have pressure issues.
What had I done? I’d taken the key to my care out of my purse. I did this because if I hadn’t, I probably would have driven off in my car in the morning, forgetting I needed to take my husband’s car so he could drop my car off for service while I was at the dentist’s office (after the mammogram stop).
It’s just a force of habit. That, or I just really like my car. I’ve done it before—left the house, been to school to drop the children off when my husband calls me saying I’ve taken the wrong car. But this time I was going to be prepared. I had plans. If I didn’t have the key to my car in my purse when I walked out to the garage in the morning I would hopefully remember I was suppose to be in the other car.
And it worked too. I walked into the garage, hit my garage door button and started walking towards the car door when I remembered. Creature of habit, or at least with my car I am.
The Big Boy Update: My son is having some screen separation issues. He’s having an opportunity to do more screen time than he typically would have as it’s summer. He’s going to have a few days off to see if he can reset some.
The Tiny Girl Chronicles: My daughter is over the fear of the eye pressure tool. Which is a big relief since we had to take her to the OR recently to get an accurate pressure. Today I think Dr. Grace must have checked it fifty times in one eye and more in the other. My daughter’s only difficulty was in trying to look forward and not roll her eyes. Her right eye is rolled almost all the time so getting to a spot where you can see pupil is difficult. She didn’t seem to mind the pressure check at all though, which is good as it makes things a lot easier since she’s had and will continue to have pressure issues.
Sunday, July 29, 2018
The Wink
My daughter and son fight. Sometimes. Sometimes they get along just fine, but you know what it’s like with siblings. I mean, I don’t know what it’s like on account of being an only child, but I hear fighting is part of the package.
My children sleep in the same room and don’t like it when the other one is away for the night. They get up in the morning and work together, playing different things, using their imagination. But they irritate the mess out of each other. My son is great at irritating his sister and she’s great at provoking him to do so. My daughter has impressive skills in tattling on her brother while he’s good at pretending like he has no idea while she’s so upset.
But on the whole, my son does get more in the way of corrections from us than my daughter does. This is in large part because he can be aggressive when it’s not called for, doesn’t listen when we tell him things and gets distracted and off task and doesn’t get things done when they need to be without repeated reminders.
And he irritates his easily irritable sister. She’s been dealing with trauma after trauma with the repeated loss of vision and the continual medical interventions so we give her a little break on things sometimes, but it’s still not fair to my son if the parenting is out of balance.
But I’ve found a way to give him an advantage sometimes. To let him know he’s special to me and that we have our little secrets together. All it takes is a wink.
There are times when both children are with me and we’re talking about something. My daughter wants to be the first to have a cookie or doesn’t want to tell my son about the plans for going out to dinner. He will get ready to get upset but stops when he sees me wink at him and mouth, “I’ll get you one in a minute” or “I’ll tell you about dinner.”
I smile this big smile at him because it’s a secret he and I are sharing together. And it makes him feel special. He’s started doing it back to me now; little things his sister wouldn’t notice about if we kept quiet about it. It’s very charming. I love it when he gives me that knowing smile and winks at me.
The Big Boy Update: My son has been doing homework every day this summer with the exception of one travel day. That’s seven days a week. He doesn’t really look forward to it, but he’s getting better at writing and reading as a result. I found a mechanical pencil and he’s been enjoying using it, clicking it up, breaking the graphite stick (accidentally) and then explaining how it doesn’t work anymore. I found replacement graphite in the back of a drawer, thankfully, so he could finish his homework tonight.
The Tiny Girl Chronicles: My daughter found a caterpillar today. She came downstairs with it carefully nestled in her hands. I took some pictures of it for her while my husband drilled holes in the lid of a jar. They made it a little environment of leaves and water in the jar. We’ll see what he’s eaten tomorrow.
My children sleep in the same room and don’t like it when the other one is away for the night. They get up in the morning and work together, playing different things, using their imagination. But they irritate the mess out of each other. My son is great at irritating his sister and she’s great at provoking him to do so. My daughter has impressive skills in tattling on her brother while he’s good at pretending like he has no idea while she’s so upset.
But on the whole, my son does get more in the way of corrections from us than my daughter does. This is in large part because he can be aggressive when it’s not called for, doesn’t listen when we tell him things and gets distracted and off task and doesn’t get things done when they need to be without repeated reminders.
And he irritates his easily irritable sister. She’s been dealing with trauma after trauma with the repeated loss of vision and the continual medical interventions so we give her a little break on things sometimes, but it’s still not fair to my son if the parenting is out of balance.
But I’ve found a way to give him an advantage sometimes. To let him know he’s special to me and that we have our little secrets together. All it takes is a wink.
There are times when both children are with me and we’re talking about something. My daughter wants to be the first to have a cookie or doesn’t want to tell my son about the plans for going out to dinner. He will get ready to get upset but stops when he sees me wink at him and mouth, “I’ll get you one in a minute” or “I’ll tell you about dinner.”
I smile this big smile at him because it’s a secret he and I are sharing together. And it makes him feel special. He’s started doing it back to me now; little things his sister wouldn’t notice about if we kept quiet about it. It’s very charming. I love it when he gives me that knowing smile and winks at me.
The Big Boy Update: My son has been doing homework every day this summer with the exception of one travel day. That’s seven days a week. He doesn’t really look forward to it, but he’s getting better at writing and reading as a result. I found a mechanical pencil and he’s been enjoying using it, clicking it up, breaking the graphite stick (accidentally) and then explaining how it doesn’t work anymore. I found replacement graphite in the back of a drawer, thankfully, so he could finish his homework tonight.
The Tiny Girl Chronicles: My daughter found a caterpillar today. She came downstairs with it carefully nestled in her hands. I took some pictures of it for her while my husband drilled holes in the lid of a jar. They made it a little environment of leaves and water in the jar. We’ll see what he’s eaten tomorrow.
Saturday, July 28, 2018
A Faint Z
My daughter and I had lunch with her braillest from last year today. We spent a lot of time talking about braille. Mrs. Aagaard had brought a special lesson in binary numbers (because that’s how computers talk to each other, she said). We learned how to represent any number from zero to two-hundred-fifty-five using only zeroes and ones. There were flaps with braille on them we flipped up for zero and down for one. My daughter liked quizzing us on numbers.
I also got a lesson from Mrs. Aagaard. She had written up a long sentence which was, she said, rather nonsensical, but she wanted to use as many contracted single-character words as possible. My daughter wanted to feel the braille because she wanted to help me read it. Unfortunately, we told her, my lesson was printed and she couldn’t feel it.
I told my daughter when we got home from lunch I’d type it up for her. We got home and later, after dinner, I did write it up for her but what happened earlier made me laugh. I was in the kitchen cleaning up from dinner when I heard my daughter call out from her desk area, “Who wrote on my braille writer this morning?” She sounded a little upset that someone had put a piece of paper in and had then typed something and left the sheet in the brailler.
She must have been reading what was there because she said next, “there was the ABC’s and then a faint ‘z’”. I could only think of one person who was learning the ABC’s and might have used her brailler while she and I were at lunch—her father. So we asked him and he confessed. Next time, he’ll work on making his z’s less faint.
The Big Boy Update: My son went to a birthday party at a trampoline park today. The last time he was at one (two weeks ago?) he figured out how to do a roundoff back flip. Today he learned how to do a backflip without the need for a roundoff. He goes to tumbling tomorrow, I wonder what else he’s going to learn>
The Tiny Girl Chronicles: My daughter and I had a very nice lunch with her now retired braillest from last school year. Mrs. Aagaard and I also had a lot to talk about with braille and school and. you name it, but mostly braille things. At the end my daughter said in exasperation, “can we end the talking? Because I’m tired of all that.”
I also got a lesson from Mrs. Aagaard. She had written up a long sentence which was, she said, rather nonsensical, but she wanted to use as many contracted single-character words as possible. My daughter wanted to feel the braille because she wanted to help me read it. Unfortunately, we told her, my lesson was printed and she couldn’t feel it.
I told my daughter when we got home from lunch I’d type it up for her. We got home and later, after dinner, I did write it up for her but what happened earlier made me laugh. I was in the kitchen cleaning up from dinner when I heard my daughter call out from her desk area, “Who wrote on my braille writer this morning?” She sounded a little upset that someone had put a piece of paper in and had then typed something and left the sheet in the brailler.
She must have been reading what was there because she said next, “there was the ABC’s and then a faint ‘z’”. I could only think of one person who was learning the ABC’s and might have used her brailler while she and I were at lunch—her father. So we asked him and he confessed. Next time, he’ll work on making his z’s less faint.
The Big Boy Update: My son went to a birthday party at a trampoline park today. The last time he was at one (two weeks ago?) he figured out how to do a roundoff back flip. Today he learned how to do a backflip without the need for a roundoff. He goes to tumbling tomorrow, I wonder what else he’s going to learn>
The Tiny Girl Chronicles: My daughter and I had a very nice lunch with her now retired braillest from last school year. Mrs. Aagaard and I also had a lot to talk about with braille and school and. you name it, but mostly braille things. At the end my daughter said in exasperation, “can we end the talking? Because I’m tired of all that.”
Friday, July 27, 2018
Little Texter
My daughter is sending text messages now. She’s doing so in a variety of ways. The first was her telling me what to say and me typing it for her. After that, I let her bang away on the emoji page, letting her know afterwards what pictures she’d sent since she couldn’t see them herself.
The next step, which we’ve only really done once, is her using her Orbit to type a message in braille which is then translated to text within the message. That’s fun, but requires the Orbit to be with us where we are and a few extra steps to get it paired, voice over on and the message chain up.
What happened during the initial excitement with the Orbit is my daughter started a conversation with my mother. They’re playing a “guess what I’m thinking about” game where one person describes the item and then the other person guesses.
The questions aren’t adult-level complicated, but more like, “I’m thinking of a fruit that’s yellow that monkeys like.” My daughter has been making up questions for Mimi as well. They started doing some math problems after that, with my daughter asking what two bananas plus two bananas was. My daughter has been trying to trick Mimi by asking what I think she believes are impossible problems such as, “what’s one minus one million?” But Mimi’s hard to trick when it comes to math.
Then, earlier this week, my daughter realized I was talking into the phone to create a text message. I explained it was voice to text—we talk and it writes out what we said in text. She said, “oh yea, dad and Uncle Bob do that.” And I thought suddenly it would be a very easy way for her to send a message to Mimi to continue their game.
It works easily and well and there’s no setup or hardware I need other than the phone, which is on me most of the time. When she gets a little older I’m going to see if I can get her set up so she can text without me being involved. We have a children’s text message app we’ve used, but it doesn’t have the voice option, but I’m sure there’s something out there we can find.
The Big Boy Update: My son spent the morning with Snap Circuit sets he got for Christmas. He was making all sorts of projects, covering the kitchen table. He’s reading and following the directions, which wouldn’t have been possible at Christmas because his reading ability wasn’t even close.
The Tiny Girl Chronicles: Today was the first day of kindergarten. She had a new “taxi” driver (school transportation SUV). She was in a new class with a new teacher and a new braillest since hers retired. A lot of changes. She was a little unhappy about getting in the taxi this morning but didn’t cry or say she wasn’t going. She got home unexpectedly early as some of the other students were driven by their parents on the first day—and we weren’t home. Fortunately, Edna, who cleans our house was here. But with all that, when I got home my daughter was excited about school and told me all about it. She’s in such a good mood.
The next step, which we’ve only really done once, is her using her Orbit to type a message in braille which is then translated to text within the message. That’s fun, but requires the Orbit to be with us where we are and a few extra steps to get it paired, voice over on and the message chain up.
What happened during the initial excitement with the Orbit is my daughter started a conversation with my mother. They’re playing a “guess what I’m thinking about” game where one person describes the item and then the other person guesses.
The questions aren’t adult-level complicated, but more like, “I’m thinking of a fruit that’s yellow that monkeys like.” My daughter has been making up questions for Mimi as well. They started doing some math problems after that, with my daughter asking what two bananas plus two bananas was. My daughter has been trying to trick Mimi by asking what I think she believes are impossible problems such as, “what’s one minus one million?” But Mimi’s hard to trick when it comes to math.
Then, earlier this week, my daughter realized I was talking into the phone to create a text message. I explained it was voice to text—we talk and it writes out what we said in text. She said, “oh yea, dad and Uncle Bob do that.” And I thought suddenly it would be a very easy way for her to send a message to Mimi to continue their game.
It works easily and well and there’s no setup or hardware I need other than the phone, which is on me most of the time. When she gets a little older I’m going to see if I can get her set up so she can text without me being involved. We have a children’s text message app we’ve used, but it doesn’t have the voice option, but I’m sure there’s something out there we can find.
The Big Boy Update: My son spent the morning with Snap Circuit sets he got for Christmas. He was making all sorts of projects, covering the kitchen table. He’s reading and following the directions, which wouldn’t have been possible at Christmas because his reading ability wasn’t even close.
The Tiny Girl Chronicles: Today was the first day of kindergarten. She had a new “taxi” driver (school transportation SUV). She was in a new class with a new teacher and a new braillest since hers retired. A lot of changes. She was a little unhappy about getting in the taxi this morning but didn’t cry or say she wasn’t going. She got home unexpectedly early as some of the other students were driven by their parents on the first day—and we weren’t home. Fortunately, Edna, who cleans our house was here. But with all that, when I got home my daughter was excited about school and told me all about it. She’s in such a good mood.
Thursday, July 26, 2018
Embarrassed
I remember being embarrassed as a child a lot. It wasn’t when I was as young as my children are now, I don’t think I understood the concept well then but by the end of elementary school I could be embarrassed by something as simple as someone pointing out the brand of my jeans was ‘Calamity Jane’ and then laughing.
That’s a true story and one I have no idea why I remember aside from the fact that I had a crush on the guy who said it. It didn’t get any easier in junior high school and high school wasn’t much better. College was less intense as I found a peer group that didn’t care at all about what the other people at the college were doing.
Then I started working as a co-op and was the youngest person around older professionals. Perhaps my inexperience in work and life made me uncomfortably embarrassed on a regular basis. I was well-liked and friends with everyone, but there’s that little bit in your head that says you should have done this thing cooler or you definitely shouldn’t have opened your mouth and said that.
I don’t know when it ended, but I can’t remember the last time I was embarrassed. I regret saying or doing things from time to time, but for the most part, I just don’t care what people think. I’m thinking this is not an uncommon phenomenon which is otherwise known as, “getting old”.
The Big Boy Update: My son is still allergic to some food-based things. We know he has an allergy to peanuts, pecans and walnuts, all of which are not life-treating, just itchy with possible hives. But there are sometimes when he has a reaction and it can’t be pinpointed to one of those as ingredients. Tonight at dinner at a restaurant we’ve been to many, many times before, he ordered several new things. Just at the end of the meal he said his upper lip was itchy. We went to the car where I keep the Benadryl and caladryl and he was fine in a few minutes. It never stopped him from running around in the parking lot. Whatever it was was on his right hand because he scratched behind his right knee and transferred the reaction there.
The Tiny Girl Chronicle: Tonight my parents came over for dinner after being out of town for several months. My father said to my daughter, “you’ve grown a foot since the last time I’ve seen you.” My daughter said in reply, “I guess I need another shoe.”
That’s a true story and one I have no idea why I remember aside from the fact that I had a crush on the guy who said it. It didn’t get any easier in junior high school and high school wasn’t much better. College was less intense as I found a peer group that didn’t care at all about what the other people at the college were doing.
Then I started working as a co-op and was the youngest person around older professionals. Perhaps my inexperience in work and life made me uncomfortably embarrassed on a regular basis. I was well-liked and friends with everyone, but there’s that little bit in your head that says you should have done this thing cooler or you definitely shouldn’t have opened your mouth and said that.
I don’t know when it ended, but I can’t remember the last time I was embarrassed. I regret saying or doing things from time to time, but for the most part, I just don’t care what people think. I’m thinking this is not an uncommon phenomenon which is otherwise known as, “getting old”.
The Big Boy Update: My son is still allergic to some food-based things. We know he has an allergy to peanuts, pecans and walnuts, all of which are not life-treating, just itchy with possible hives. But there are sometimes when he has a reaction and it can’t be pinpointed to one of those as ingredients. Tonight at dinner at a restaurant we’ve been to many, many times before, he ordered several new things. Just at the end of the meal he said his upper lip was itchy. We went to the car where I keep the Benadryl and caladryl and he was fine in a few minutes. It never stopped him from running around in the parking lot. Whatever it was was on his right hand because he scratched behind his right knee and transferred the reaction there.
The Tiny Girl Chronicle: Tonight my parents came over for dinner after being out of town for several months. My father said to my daughter, “you’ve grown a foot since the last time I’ve seen you.” My daughter said in reply, “I guess I need another shoe.”
Wednesday, July 25, 2018
What’s That Great Smell?
We’re driving home today from visiting family in New Jersey. It’s a long day’s travel, starting with a ferry ride early in the morning. Or it was suppose to be, provided we had our alarms set and got up in time to get out of the house to make the ferry’s departure time.
I rolled over and looked at my phone: 8:07AM…when was it we were suppose to leave, I though? I woke up my husband and he said 8:30AM. So we scrambled. We had packed, but we had to get the things off the children’s bed, the children dressed, the car packed, explain to the children we had to hurry (which never seems to be important to them) and say goodbye to our family.
We made it out by 8:35AM. I bought a ticket for the 9:30AM ferry online while my husband drove. We weren’t sure if we were taking the ferry route but we’ve had traffic issues going the other route. So even though the ferry may have been the longer, it was a more relaxed route—that is if we woke up in time to make it.
The ferry departs once an hour, but we stop to change at Tesla supercharger stations and my husband likes to plan our route to stop at optimal times for meals. He’s good at the trip planning. And he’s good with the alarm setting, only we both forgot last night. Still, we made it out, said our goodbyes quickly and got on the ferry.
We ate some breakfast on the ferry, enjoyed some rocky weather on the water with light rain and then ibupwere on our way for the rest of the trip. My children’s backs were bothering them, which is a little unusual. My back was bothering me, which isn’t unusual at all. We stopped in at a RiteAid to get some ibuprofen for them. I waited in the car with my children and saw my husband come out with a bag larger than would be needed for just the bottle of ibuprofen.
My son was looking at his iPad, as was my daughter as we drove off. He pulled out from the bag a package of M&M’s and opened them. Five seconds later my daughter called out, “what’s that great smell? Is there chocolate in here?” My husband and I just laughed, because there’s not much you can get past her if it’s sound or smell related.
She now knows there are M&M’s in the car—and she loves M&M’s. We have to tell her she can’t have any more now, but she doesn’t give up easily. She piped up, “do I hear M&M’s” when my husband had some a while later. And now, as I’m writing this she’s asking, “I’m sure looking forward to having more M&M’s” followed by, “I just can’t wait for M&M’s”. And now she’s singing a song she’s made up about M&M’s.
We have three more hours of this. She’s been warned to pipe down or she won’t get any. She’s tenacious though.
The Big Boy Update: My son has turned into a very good traveller. He used to complain, be noisy and, oh yes, get car sick. We have dramamine now and we give him a half tablet if he thinks he’s not feeling well (which he tells us early on). We can travel with him all day. It’s nice.
The Tiny Girl Chronicles: My daughter wanted to bring home some seaweed she found on the beach. I told her it might not be that interesting when it was all dried up, but she said she still wanted it. Today as I was packing I found the very small remainder of what’s left of seaweed once all the water has evaporated from it. I put it in her shell and packed it though.
I rolled over and looked at my phone: 8:07AM…when was it we were suppose to leave, I though? I woke up my husband and he said 8:30AM. So we scrambled. We had packed, but we had to get the things off the children’s bed, the children dressed, the car packed, explain to the children we had to hurry (which never seems to be important to them) and say goodbye to our family.
We made it out by 8:35AM. I bought a ticket for the 9:30AM ferry online while my husband drove. We weren’t sure if we were taking the ferry route but we’ve had traffic issues going the other route. So even though the ferry may have been the longer, it was a more relaxed route—that is if we woke up in time to make it.
The ferry departs once an hour, but we stop to change at Tesla supercharger stations and my husband likes to plan our route to stop at optimal times for meals. He’s good at the trip planning. And he’s good with the alarm setting, only we both forgot last night. Still, we made it out, said our goodbyes quickly and got on the ferry.
We ate some breakfast on the ferry, enjoyed some rocky weather on the water with light rain and then ibupwere on our way for the rest of the trip. My children’s backs were bothering them, which is a little unusual. My back was bothering me, which isn’t unusual at all. We stopped in at a RiteAid to get some ibuprofen for them. I waited in the car with my children and saw my husband come out with a bag larger than would be needed for just the bottle of ibuprofen.
My son was looking at his iPad, as was my daughter as we drove off. He pulled out from the bag a package of M&M’s and opened them. Five seconds later my daughter called out, “what’s that great smell? Is there chocolate in here?” My husband and I just laughed, because there’s not much you can get past her if it’s sound or smell related.
She now knows there are M&M’s in the car—and she loves M&M’s. We have to tell her she can’t have any more now, but she doesn’t give up easily. She piped up, “do I hear M&M’s” when my husband had some a while later. And now, as I’m writing this she’s asking, “I’m sure looking forward to having more M&M’s” followed by, “I just can’t wait for M&M’s”. And now she’s singing a song she’s made up about M&M’s.
We have three more hours of this. She’s been warned to pipe down or she won’t get any. She’s tenacious though.
The Big Boy Update: My son has turned into a very good traveller. He used to complain, be noisy and, oh yes, get car sick. We have dramamine now and we give him a half tablet if he thinks he’s not feeling well (which he tells us early on). We can travel with him all day. It’s nice.
The Tiny Girl Chronicles: My daughter wanted to bring home some seaweed she found on the beach. I told her it might not be that interesting when it was all dried up, but she said she still wanted it. Today as I was packing I found the very small remainder of what’s left of seaweed once all the water has evaporated from it. I put it in her shell and packed it though.
Tuesday, July 24, 2018
How Do You Say Goodbye Tonight?
It’s our last night visiting family in New Jersey. I’ve packed up everything that can be packed before tomorrow morning’s car loading. My husband has been planning our departure time, route and supercharger stops to get us home in either optimal time, most efficient route or more likely least traffic-heavy roads.
I think we’re leaving sometime between eight-thirty and nine-thirty, depending on which ferry we plan on catching. I don’t have an alarm set, but with the hour my daughter has been waking up recently, it won’t be a problem.
My children just got back from getting ice cream with their aunt and we’re getting them ready for bed. Someone must have said they’d have to say goodbye tonight to my daughter tonight, because I heard in her little sing-song voice, “how do you say goodbye tonight?”
Aunt Kelly explained that they may not be awake when we leave in the morning, so they would say goodbye tonight. My daughter got it and went around hugging everyone goodbye.
The Big Boy Update: My son just had ice cream at nine-thirty at night. He’s very awake and very energetic. I almost had to tie him down to get him in his pajamas and have him brush his teeth.
The Tiny Girl Chronicles: My daughter is going to miss the puppy, Daisy. She likes doing anything with Daisy. Daisy likes it when she plays squeaker toy games with her.
I think we’re leaving sometime between eight-thirty and nine-thirty, depending on which ferry we plan on catching. I don’t have an alarm set, but with the hour my daughter has been waking up recently, it won’t be a problem.
My children just got back from getting ice cream with their aunt and we’re getting them ready for bed. Someone must have said they’d have to say goodbye tonight to my daughter tonight, because I heard in her little sing-song voice, “how do you say goodbye tonight?”
Aunt Kelly explained that they may not be awake when we leave in the morning, so they would say goodbye tonight. My daughter got it and went around hugging everyone goodbye.
The Big Boy Update: My son just had ice cream at nine-thirty at night. He’s very awake and very energetic. I almost had to tie him down to get him in his pajamas and have him brush his teeth.
The Tiny Girl Chronicles: My daughter is going to miss the puppy, Daisy. She likes doing anything with Daisy. Daisy likes it when she plays squeaker toy games with her.
Monday, July 23, 2018
Memory
My daughter has a very good memory. Perhaps all children do, but my daughter seems to have an uncanny ability to remember all sorts of things. She has a mind value she pulls things out of that surprise us sometimes.
My husband decided to test her today after she suddenly started talking about something we had to eat for dinner weeks a long time back. My husband asked her, “what was it we had for dinner with Nana and Papa on the Fourth of July?” We were at an outdoor festival where each of us waited in a different food truck line. And she remembered it all.
So my husband asked her if she remembered what we had to eat at the State Fair—which was last October. She rattled off what each of us had, describing some things she didn’t know the names of, like the crawfish tails I had. He and I looked at each other as she listed thing after thing we each ate.
Then she said, “what day do you want to talk about? Do you want to talk about 1939?” And my husband and I laughed. Out loud. She said it so matter of factly, like she had it all cataloged in her head, back to before she was born.
The Big Boy Update: My son has anxiety issues over doing his homework. Specifically, corrections to the homework. He will spend forty-five minutes agonizing over starting, because he doesn’t want to have corrections. It’s preventing him from starting the work, even though when he finally does, he completes it fairly quickly. Hopefully we can help him work through his anxiety so he can get back to doing other, more fun, things in his life (like playing Fortnite.)
The Tiny Girl Chronicles: My daughter wanted Kona Ice this week. A lot of Kona Ice. In years past, the Kona truck had been parked at the house her at my brother-in-law’s house (they own a Kona Ice franchise). The lack of truck this year has made her a bit sad. Today we went to their warehouse. My daughter went inside the Kona truck and had multiple Kona’s, making up her own flavor names as she combined syrups onto her ice. She is, finally, I think, satisfied.
My husband decided to test her today after she suddenly started talking about something we had to eat for dinner weeks a long time back. My husband asked her, “what was it we had for dinner with Nana and Papa on the Fourth of July?” We were at an outdoor festival where each of us waited in a different food truck line. And she remembered it all.
So my husband asked her if she remembered what we had to eat at the State Fair—which was last October. She rattled off what each of us had, describing some things she didn’t know the names of, like the crawfish tails I had. He and I looked at each other as she listed thing after thing we each ate.
Then she said, “what day do you want to talk about? Do you want to talk about 1939?” And my husband and I laughed. Out loud. She said it so matter of factly, like she had it all cataloged in her head, back to before she was born.
The Big Boy Update: My son has anxiety issues over doing his homework. Specifically, corrections to the homework. He will spend forty-five minutes agonizing over starting, because he doesn’t want to have corrections. It’s preventing him from starting the work, even though when he finally does, he completes it fairly quickly. Hopefully we can help him work through his anxiety so he can get back to doing other, more fun, things in his life (like playing Fortnite.)
The Tiny Girl Chronicles: My daughter wanted Kona Ice this week. A lot of Kona Ice. In years past, the Kona truck had been parked at the house her at my brother-in-law’s house (they own a Kona Ice franchise). The lack of truck this year has made her a bit sad. Today we went to their warehouse. My daughter went inside the Kona truck and had multiple Kona’s, making up her own flavor names as she combined syrups onto her ice. She is, finally, I think, satisfied.
Sunday, July 22, 2018
Well Drat!
Every day I write a blog post. Every day before the end of the day I put something down here about what I’ve been thinking about or something happening in the lives of our family. On a few occasions it’s been hard, but I’ve still gotten a post up. Once, when I had unexpected abscess surgery and was admitted to the hospital after going to the emergency room and having a doctor tell me, “this is serious, we’re doing surgery and admitting you” I called my husband and asked him to bring my laptop in—because I had to write my blog post.
And then there are times—fairly rarely—that I just up and forget to do the post. That’s what happened last night. I don’t have a lot of readers, which is fine by me. Truthfully, I envision this blog as me just talking to myself for the most part. So this morning I got two text messages asking where my blog post was for yesterday? Well drat, I forgot. So this morning I’m writing the post for yesterday and cheating by backdating it to last night at 11:30pm.
It wasn’t that I wasn’t doing anything last night, I had been working hard on my computer; it just slipped my mind—which is unusual, as I’ve been writing a blog post every day since late 2011. It’s ingrained behavior for me now—I don’t even think about it usually, it’s just what I do at the end of the night.
What was I doing? Aside from the standard parent of a six- and seven-year-old child, I was doing homework. I’m taking a braille class online and have become fairly obsessed with learning braille. It’s more than just the alphabet, it’s complex while simple at the same time. This is the first of a series of classes which will hopefully let me be fluent in braille.
This is the homework I was working on last night:
What does all that say?
The Big Boy Update: We went to brunch at a diner that had Mr. Incredible and Elastigirl there to meet and talk to the children today. My son loves the movies but he was apparently above it this morning, saying, “I’m just a normal, humble man.”
The Tiny Girl Chronicles: My daughter has been my mentor in the process of learning braille. I don’t need her as much as I pretend I do but she loves being involved so I ask for her help often. I’ll say, ”is ‘p’ dots 1234?” and she’ll say, “yes, that’s ‘p’”. Or I’ll ask, “what’s period again? I always forget” and she’ll say back, “it’s drop d, remember?” and I’ll respond, “oh, that’s right, so it’s 256 then”.
It wasn’t that I wasn’t doing anything last night, I had been working hard on my computer; it just slipped my mind—which is unusual, as I’ve been writing a blog post every day since late 2011. It’s ingrained behavior for me now—I don’t even think about it usually, it’s just what I do at the end of the night.
What was I doing? Aside from the standard parent of a six- and seven-year-old child, I was doing homework. I’m taking a braille class online and have become fairly obsessed with learning braille. It’s more than just the alphabet, it’s complex while simple at the same time. This is the first of a series of classes which will hopefully let me be fluent in braille.
This is the homework I was working on last night:
What does all that say?
Choco Peanut Butter Squares
Ingredients
1. 2 cups sugar
2. 1 51/3 oz. can evaporated milk
3. 1⁄4 cup peanut butter
4. 1 box instant chocolate pudding
5. 2 cups quick cooking rolled oats
Directions
1. Combine sugar with milk and peanut butter in a glass bowl.
2. Microwave about 3 minutes or until peanut butter is melted and sugar is dissolved.
3. Add pudding mix and oats. Mix well.
4. Spread in an 8 by 8 inch pan.
5. Cool thoroughly.
6. Cut into 1 inch squares.
Shopping ListIt took me about a half-hour to write it all out in braille. Which I’ll take as an accomplishment considering two weeks ago I couldn’t tell you the letters of the alphabet in braille, much less how to write fractions or currency. But I have a long way to go to learn braille, but it’s fun.
2. 1 51⁄3 oz. can Carnation evaporated milk $0.86
3. Jif peanut butter $2.93
4. 1 box Royal instant chocolate pudding mix $0.953. Jif peanut butter $2.934. 1 box Royal instant chocolate pudding mix $0.95
5. Quaker quick cooking rolled oats
The Big Boy Update: We went to brunch at a diner that had Mr. Incredible and Elastigirl there to meet and talk to the children today. My son loves the movies but he was apparently above it this morning, saying, “I’m just a normal, humble man.”
The Tiny Girl Chronicles: My daughter has been my mentor in the process of learning braille. I don’t need her as much as I pretend I do but she loves being involved so I ask for her help often. I’ll say, ”is ‘p’ dots 1234?” and she’ll say, “yes, that’s ‘p’”. Or I’ll ask, “what’s period again? I always forget” and she’ll say back, “it’s drop d, remember?” and I’ll respond, “oh, that’s right, so it’s 256 then”.
Saturday, July 21, 2018
It’s Raining, It’s Pouring
I hear there is to be fifteen days of rain where we are on vacation this week. I don’t particularly mind, I like weather. Perhaps I should be upset we won’t be able to go to the beach, but I’m not really disappointed. My children are happy just spending time with their cousins, aunt and uncle, oh, and their new puppy, while we’re here.
Today we lounged around this morning and then my husband went to go pick up Uncle Bob, who’s visiting for a short span, in for a surprise birthday party for a great aunt. We went to lunch in the rain and then spent the afternoon at the house. My son, who is never out of energy, went to a trampoline park with Uncle Bob and my husband while my daughter napped.
She never naps, but the antibiotic she’s on for her bladder infection seems to knock her out a few hours after she takes it. She was going to go to the Kona warehouse with Uncle Eric until we realized we didn’t have any car seats with us, what with dad having out car at the trampoline place, so we made do with some fun at the house.
We spent some time in the hot tub and then had a late dinner. And then I read bedtime stories to the children. Tomorrow is another surprise birthday party for another great aunt on the other side of the family. Half of the family was out today for the one party and the other half will be out tomorrow for the second party. The children and I are home for both days, enjoying the rain and the covered hot tub.
The Big Boy Update: My son is a sucker. That or his cousin Kyle is a master French fry stealer. Kyle did the, “what’s that over there?” bit to my son the other night at dinner and my son fell for it—big time. Kyle kept distracting my son so convincingly that he got out of his seat to go across the restaurant and point to things hanging on the wall, calling out, “this one?” My son never noticed his fries were dwindling.
The Tiny Girl Chronicles: This morning after breakfast my daughter was hungry (she always is). She told me, “I made a new holiday for our family: ‘Sugar Day'. And today is Sugar Day!” Then she asked if we could go get some donuts.
Today we lounged around this morning and then my husband went to go pick up Uncle Bob, who’s visiting for a short span, in for a surprise birthday party for a great aunt. We went to lunch in the rain and then spent the afternoon at the house. My son, who is never out of energy, went to a trampoline park with Uncle Bob and my husband while my daughter napped.
She never naps, but the antibiotic she’s on for her bladder infection seems to knock her out a few hours after she takes it. She was going to go to the Kona warehouse with Uncle Eric until we realized we didn’t have any car seats with us, what with dad having out car at the trampoline place, so we made do with some fun at the house.
We spent some time in the hot tub and then had a late dinner. And then I read bedtime stories to the children. Tomorrow is another surprise birthday party for another great aunt on the other side of the family. Half of the family was out today for the one party and the other half will be out tomorrow for the second party. The children and I are home for both days, enjoying the rain and the covered hot tub.
The Big Boy Update: My son is a sucker. That or his cousin Kyle is a master French fry stealer. Kyle did the, “what’s that over there?” bit to my son the other night at dinner and my son fell for it—big time. Kyle kept distracting my son so convincingly that he got out of his seat to go across the restaurant and point to things hanging on the wall, calling out, “this one?” My son never noticed his fries were dwindling.
The Tiny Girl Chronicles: This morning after breakfast my daughter was hungry (she always is). She told me, “I made a new holiday for our family: ‘Sugar Day'. And today is Sugar Day!” Then she asked if we could go get some donuts.
Friday, July 20, 2018
The Boardwalk Worry
We went to the boardwalk this evening. We stopped by the Kona Ice truck my brother-in-law and his wife own at a local talent show even first because my daughter has been taking about Kona Ice since before we arrived. She has been bitterly disappointed the Kona Ice truck hasn’t been parked outside their house where we’re staying because in years past, she’s been able to go outside and get “Konas” multiple times per day.
This year it had been two days and she still didn’t have Kona yet. And she was letting us know how she felt about that. So we stopped in, had some pre-dinner dessert, and then headed to the boardwalk for dinner proper and then some rides.
Only it didn’t work out as planned. My children had gotten chilled from eating the shaved ice. It was unexpectedly cool and there was a good bit of wind. Two cold, unhappy children and we stopped in to the first sit down restaurant we ran into on the boardwalk. As we were walking there my daughter asked me what that noise was. I told her it was a tram that went up and down on the boardwalk to carry people who did want to or couldn’t walk. I explained how there were two tram paths and showed her with her cane how the path was paved, while the rest of the boardwalk was wooden boards. I pointed out the yellow painted lines on either side of the tram paths.
And that’s when fear set in. Nothing, absolutely nothing, could shake her from the topic. She talked about it at dinner. We explained how it moved slowly and the warning was so that people didn’t cause the tram to stop constantly. That people walked in the tram path the majority of the time and got out of the way when they heard the announcement. That the tram was there to help people, not to hurt them.
It didn’t matter what you said, she was fixated on the tram, it’s path and avoiding both. Including crossing it when we had to. I had her touch the stopped tram, which the first time went very badly. The second time she touched the tram and seat briefly and then wanted to get away again. She wanted to know when the tram was coming, if it had left, and constantly asked if we were on the tram path. She got mad if we were, even if we had to do so because of the crowds. It felt like a no win situation.
We thought we were a little better equipped to handle these kinds of fear situations after my talk with Dhruti the other day, but nothing seemed to work. At one point I lost my temper and left her at the fence (safely of course) and walked five steps away, saying if she wasn’t able to trust us and really didn’t want to cross the tracks then we couldn’t do anything, get anything to eat or get to our car to go home. I told her I was going to go have fun as I pretend walked away.
This was one little thing in the world that has no bearing on her life because we may never go back there again. But she focused so much on it she wasn’t able to do or enjoy anything else. We ended up not staying that long because the children were still cold and there weren’t any rides at their height that they wanted to go on.
But as far as fun goes, I don’t know if my daughter had any because she was too scared most of the time.
The Big Boy Update: My son saw Fortnite shirts at the boardwalk today. My husband and I split up with a child each for a bit and when we got back together my son had picked out a Fortnite shirt with the famous player, Ninja’s, logo on it. He will probably wear it every day for the next week.
The Tiny Girl Chronicles: My husband and daughter came into take a shower in our bedroom after going for a ride on a jet ski this afternoon. I was working on my computer on the bed. My daughter said to her father as they headed for the bathroom, “don’t worry about mom, she’s doing nothing.”
This year it had been two days and she still didn’t have Kona yet. And she was letting us know how she felt about that. So we stopped in, had some pre-dinner dessert, and then headed to the boardwalk for dinner proper and then some rides.
Only it didn’t work out as planned. My children had gotten chilled from eating the shaved ice. It was unexpectedly cool and there was a good bit of wind. Two cold, unhappy children and we stopped in to the first sit down restaurant we ran into on the boardwalk. As we were walking there my daughter asked me what that noise was. I told her it was a tram that went up and down on the boardwalk to carry people who did want to or couldn’t walk. I explained how there were two tram paths and showed her with her cane how the path was paved, while the rest of the boardwalk was wooden boards. I pointed out the yellow painted lines on either side of the tram paths.
And that’s when fear set in. Nothing, absolutely nothing, could shake her from the topic. She talked about it at dinner. We explained how it moved slowly and the warning was so that people didn’t cause the tram to stop constantly. That people walked in the tram path the majority of the time and got out of the way when they heard the announcement. That the tram was there to help people, not to hurt them.
It didn’t matter what you said, she was fixated on the tram, it’s path and avoiding both. Including crossing it when we had to. I had her touch the stopped tram, which the first time went very badly. The second time she touched the tram and seat briefly and then wanted to get away again. She wanted to know when the tram was coming, if it had left, and constantly asked if we were on the tram path. She got mad if we were, even if we had to do so because of the crowds. It felt like a no win situation.
We thought we were a little better equipped to handle these kinds of fear situations after my talk with Dhruti the other day, but nothing seemed to work. At one point I lost my temper and left her at the fence (safely of course) and walked five steps away, saying if she wasn’t able to trust us and really didn’t want to cross the tracks then we couldn’t do anything, get anything to eat or get to our car to go home. I told her I was going to go have fun as I pretend walked away.
This was one little thing in the world that has no bearing on her life because we may never go back there again. But she focused so much on it she wasn’t able to do or enjoy anything else. We ended up not staying that long because the children were still cold and there weren’t any rides at their height that they wanted to go on.
But as far as fun goes, I don’t know if my daughter had any because she was too scared most of the time.
The Big Boy Update: My son saw Fortnite shirts at the boardwalk today. My husband and I split up with a child each for a bit and when we got back together my son had picked out a Fortnite shirt with the famous player, Ninja’s, logo on it. He will probably wear it every day for the next week.
The Tiny Girl Chronicles: My husband and daughter came into take a shower in our bedroom after going for a ride on a jet ski this afternoon. I was working on my computer on the bed. My daughter said to her father as they headed for the bathroom, “don’t worry about mom, she’s doing nothing.”
Thursday, July 19, 2018
Another Blast From The Past
I worked with someone named John back in 1990 when I first started as a co-op at IBM. I remember him in the software design meetings my first week at the beginning of the year when I was a sophomore in college, working my first, “real job” in the industry. I was lost. There was so much going on at a high level that I had scarcely the knowledge to even make remote sense of at the time.
I worked with John for almost four years at IBM. I was a co-op and then an employee. During that time he was a consultant, helping us implement object oriented technology via the language Smalltalk. It was an intense time, but it was fun. He was a mentor to me and I was sad when he left to go to another small consulting company.
Shortly after that IBM was doing layoffs and I was in a special class of employment as a, “Term Employee”. This meant I was hired with a fixed end date to my employment. As the end of my term drew near I worked with my manager to find out if I would be offered a “Regular Employee” position but as time dragged on and I heard nothing, I pursued other employment, including the company my friend, John, had gone to work for.
A month become my term employment was up I let my manager know I wouldn’t be interested in full-time employment, should they decide to offer me a position because I had another opportunity. Suddenly my manager was interested in retaining me, coming back and offering to match my other job in salary. But I declined.
I found working for a small, upstart consulting company interesting and challenging. Working alongside my friend and mentor, John, again was nice. We worked together for a few years and then each took employment opportunities in different directions. And we lost touch.
This was before smart phones and way before social media. We had lunch one time about fifteen years ago when he was in town to do some consulting work and then three years ago he found me on Facebook. We would message a time or two every four months or so. He had gotten remarried, was expecting his first grandchild, etc.
But I’m notoriously bad with social media. This past week I realized there was a notification from May on Facebook Messenger that I hadn’t read. When I realized it was from John I sent him a reply and said, “here’s my mobile number, text me there, I’m much more reliable on responses”. So he did.
Then we decided to cut through all the slow text-based communication and just get on the phone, which is a much better way to catch up on fifteen years of lives than texting can ever be. He’s still consulting and traveling. He went to school to become a chef during his time at home. I told him about my children and how much fun and challenging they can be at the same time. We talked for almost an hour. It was just like old times though.
The Big Boy Update: My son has had a girlfriend for about three years now. This would be his cousin, Kyle’s, girlfriend—who is in college now. I asked him yesterday as he say on the couch with Kyle, playing Fortnite together, “did you break up with Madison?” He said, “what? No, me and her are friends.” I said, “I thought she was your girlfriend.” He explained, “no, me and Kyle were fighting too much so we’re just friends now.”
The Tiny Girl Chronicles: My daughter had a much better day today on the fear front. She got out of the boat at the inlet and was playing in the sand. I brought over a dead crab I found and put the small claw that had broken off in her hand, explaining what it was. She wanted to feel the rest of the crab, which was good because she was very scared of a possible crab near her yesterday. She asked if this was the crab from yesterday and when I said no, that this one had been dead for several days, she asked if she could take it back on the boat with us. This was one of several things that happened that she was able to handle without getting very afraid. She still had a good number of fear moments, but we did have some positive experiences today for her to process.
I worked with John for almost four years at IBM. I was a co-op and then an employee. During that time he was a consultant, helping us implement object oriented technology via the language Smalltalk. It was an intense time, but it was fun. He was a mentor to me and I was sad when he left to go to another small consulting company.
Shortly after that IBM was doing layoffs and I was in a special class of employment as a, “Term Employee”. This meant I was hired with a fixed end date to my employment. As the end of my term drew near I worked with my manager to find out if I would be offered a “Regular Employee” position but as time dragged on and I heard nothing, I pursued other employment, including the company my friend, John, had gone to work for.
A month become my term employment was up I let my manager know I wouldn’t be interested in full-time employment, should they decide to offer me a position because I had another opportunity. Suddenly my manager was interested in retaining me, coming back and offering to match my other job in salary. But I declined.
I found working for a small, upstart consulting company interesting and challenging. Working alongside my friend and mentor, John, again was nice. We worked together for a few years and then each took employment opportunities in different directions. And we lost touch.
This was before smart phones and way before social media. We had lunch one time about fifteen years ago when he was in town to do some consulting work and then three years ago he found me on Facebook. We would message a time or two every four months or so. He had gotten remarried, was expecting his first grandchild, etc.
But I’m notoriously bad with social media. This past week I realized there was a notification from May on Facebook Messenger that I hadn’t read. When I realized it was from John I sent him a reply and said, “here’s my mobile number, text me there, I’m much more reliable on responses”. So he did.
Then we decided to cut through all the slow text-based communication and just get on the phone, which is a much better way to catch up on fifteen years of lives than texting can ever be. He’s still consulting and traveling. He went to school to become a chef during his time at home. I told him about my children and how much fun and challenging they can be at the same time. We talked for almost an hour. It was just like old times though.
The Big Boy Update: My son has had a girlfriend for about three years now. This would be his cousin, Kyle’s, girlfriend—who is in college now. I asked him yesterday as he say on the couch with Kyle, playing Fortnite together, “did you break up with Madison?” He said, “what? No, me and her are friends.” I said, “I thought she was your girlfriend.” He explained, “no, me and Kyle were fighting too much so we’re just friends now.”
The Tiny Girl Chronicles: My daughter had a much better day today on the fear front. She got out of the boat at the inlet and was playing in the sand. I brought over a dead crab I found and put the small claw that had broken off in her hand, explaining what it was. She wanted to feel the rest of the crab, which was good because she was very scared of a possible crab near her yesterday. She asked if this was the crab from yesterday and when I said no, that this one had been dead for several days, she asked if she could take it back on the boat with us. This was one of several things that happened that she was able to handle without getting very afraid. She still had a good number of fear moments, but we did have some positive experiences today for her to process.
Wednesday, July 18, 2018
Mister Small Guy and Chocolate
My daughter has been having a very hard time lately with her increased vision loss. She’s feisty by nature but the reduction in vision is causing her a lot of anxiety. I had a chance to talk to her therapist today on the phone to get some guidance and make sure my husband and I were handling it the best way we could.
What she said was my daughter is operating from her amygdala. She’s afraid all of the time, about everything. This fear has increased dramatically over the past three weeks or so, and follows what seems to be the additional vision loss. She doesn’t want to go near the road because of cars. She is afraid to get near the friendly puppy because she might jump up on you. Today at the beach she wouldn’t go into the sand because my husband said there was a crab way up the hill, wouldn’t touch the water because there had been a jellyfish spotted and tried to hide on the other side of the boat because a green head fly bit Uncle Eric on the other side.
She doesn’t feel safe, which is different than being safe. We can tell her we’re keeping her safe, but she doesn’t feel that way, because she’s out of control of her life and mobility. As a result, she’s living in the reptilian part of her brain and living in fear. She’s not able to detect if a situation is a threat or not so she’s evaluating everything as a threat.
We can tell her we’re keeping her safe, but we need to help her through experiences and then, afterwards, talk her through what happened so she can gain solace from those successes. We don’t need to talk about her vision or how she can’t see, just go through what happened and how everything turned out okay. It’s going to take time for her to adjust. This is trauma and she’s been through trauma after trauma with her vision. We have to be there and help and she’ll work through it.
There’s another thing that’s happening now. She needs attention constantly. She wants to do things with you all the time. With someone, anyone, because she’s bored. Or so I thought. In part it’s that, because when you can’t see, there are a lot less things you can do to be entertained. Her therapist said that’s only half of it.
Right now she can’t self-regulate. She’s co-regulating. She needs someone there, with her, to feel okay, safe and regulated. Unfortunately, for now we can’t help her much with this. While she’s living in her amygdala, she’s going to need to co-regulate.
She and my son were working with their integrative therapist a few weeks ago and were talking about their amygdalas. Liz was talking to them about what happens and how we feel when our amygdala is in charge. To make it a little more concrete she had the children name their amygdalas. My son named his, “Mister Small Guy” and my daughter named hers, “Chocolate”.
So for now, we’re going to do what we can to help Chocolate feel safe and not alone in the world.
The Big Boy Update: We were out on the boat today and my son was trying on his most “cool” poses wearing the clout goggle sunglasses. Kyle said to him, “do you want to borrow my hat?” thinking that might add to his posing. My son replied quickly, “no, I don’t want to risk getting lice.” Kyle and I looked at each other and laughed as he replied, “I don’t have lice, I have style.”
The Tiny Girl Chronicles: This never happens. My daughter never, ever says she’s upset because she can’t see something. I don’t know how she processes things she can’t do or see, but she never verbalizes them. Today my son got up from lunch to demonstrate a dance he had created combining the Dab and Floss dance moves. My daughter said rather quietly at the table, “I’m so mad I can’t see that.”
What she said was my daughter is operating from her amygdala. She’s afraid all of the time, about everything. This fear has increased dramatically over the past three weeks or so, and follows what seems to be the additional vision loss. She doesn’t want to go near the road because of cars. She is afraid to get near the friendly puppy because she might jump up on you. Today at the beach she wouldn’t go into the sand because my husband said there was a crab way up the hill, wouldn’t touch the water because there had been a jellyfish spotted and tried to hide on the other side of the boat because a green head fly bit Uncle Eric on the other side.
She doesn’t feel safe, which is different than being safe. We can tell her we’re keeping her safe, but she doesn’t feel that way, because she’s out of control of her life and mobility. As a result, she’s living in the reptilian part of her brain and living in fear. She’s not able to detect if a situation is a threat or not so she’s evaluating everything as a threat.
We can tell her we’re keeping her safe, but we need to help her through experiences and then, afterwards, talk her through what happened so she can gain solace from those successes. We don’t need to talk about her vision or how she can’t see, just go through what happened and how everything turned out okay. It’s going to take time for her to adjust. This is trauma and she’s been through trauma after trauma with her vision. We have to be there and help and she’ll work through it.
There’s another thing that’s happening now. She needs attention constantly. She wants to do things with you all the time. With someone, anyone, because she’s bored. Or so I thought. In part it’s that, because when you can’t see, there are a lot less things you can do to be entertained. Her therapist said that’s only half of it.
Right now she can’t self-regulate. She’s co-regulating. She needs someone there, with her, to feel okay, safe and regulated. Unfortunately, for now we can’t help her much with this. While she’s living in her amygdala, she’s going to need to co-regulate.
She and my son were working with their integrative therapist a few weeks ago and were talking about their amygdalas. Liz was talking to them about what happens and how we feel when our amygdala is in charge. To make it a little more concrete she had the children name their amygdalas. My son named his, “Mister Small Guy” and my daughter named hers, “Chocolate”.
So for now, we’re going to do what we can to help Chocolate feel safe and not alone in the world.
The Big Boy Update: We were out on the boat today and my son was trying on his most “cool” poses wearing the clout goggle sunglasses. Kyle said to him, “do you want to borrow my hat?” thinking that might add to his posing. My son replied quickly, “no, I don’t want to risk getting lice.” Kyle and I looked at each other and laughed as he replied, “I don’t have lice, I have style.”
The Tiny Girl Chronicles: This never happens. My daughter never, ever says she’s upset because she can’t see something. I don’t know how she processes things she can’t do or see, but she never verbalizes them. Today my son got up from lunch to demonstrate a dance he had created combining the Dab and Floss dance moves. My daughter said rather quietly at the table, “I’m so mad I can’t see that.”
Tuesday, July 17, 2018
127
My daughter has been going to Detroit with either my husband or me fairly regularly since 2015. We’ve only stayed at one hotel ever since that very first visit. It’s about a twelve minute drive to get to the hospital and Dr. Trese’s office and there are probably closer options, but this particular Mariott Courtyard works for us.
For a long time we had one night manager we would see evert time named Susan. She loved my daughter and my daughter loved her. Susan would have candy and little things for my daughter and she knew where we liked to stay in the hotel. It’s not the same without Susan.
But we still like to stat in the same hotel room. When we arrive either my husband or I will ask if room 127 is available. It’s right by one of the external entrances which makes getting in and out of the building easier and it’s on the first floor. But more importantly, it’s right beside the pool. And that’s the most important thing to my daughter.
When we arrived on Sunday I asked about room 127. The person at the front desk remembered us and even though it wasn’t quite ready, she was able to get us into the room, saying it was coincidentally the only room on the first floor still available as they were sold out for the night. Room 127 is almost like home to us when we’re in Detroit.
My daughter loves the food at the cafe in the hotel, which my husband and I aren’t that keen on. This time it had been several months since we’d been and there was a potentially catastrophic change at the hotel—the Cafe had changed all their food. That meant the rather meh pizza my daughter loves was no longer available. And the chocolate chip muffin she looks forward to for breakfast wasn’t served anymore.
I rather liked the food changes, but I was afraid she would take exception to her favorite foods being gone. But she rolled with it, having a cheeseburger for dinner and some banana nut bread for breakfast. And since she rarely finishes anything, this worked for me as I had something to eat that I didn’t consume just to keep from wasting food.
We’ve left Detroit now without a known return date, but we’ll go even sometime in the future I’m sure given the state of my daughter’s eyes.
The Big Boy Update: After dinner tonight my son said to me, “this is how I throw a baseball”. And then he showed me a great baseball throw from stance to follow-through. He’s been to one baseball game, but he picked it up without ease. We might need to look into getting him onto a team if he keeps up this level of interest.
The Tiny Girl Chronicles: My daughter has been very understanding about the new drops we have to do six times a day. As I’m wriiting this I’m realizing we’re a round of drops behind. Her new grey drops are yellow and viscous but apparently they don’t sting because she’s not bothered by then at all.
For a long time we had one night manager we would see evert time named Susan. She loved my daughter and my daughter loved her. Susan would have candy and little things for my daughter and she knew where we liked to stay in the hotel. It’s not the same without Susan.
But we still like to stat in the same hotel room. When we arrive either my husband or I will ask if room 127 is available. It’s right by one of the external entrances which makes getting in and out of the building easier and it’s on the first floor. But more importantly, it’s right beside the pool. And that’s the most important thing to my daughter.
When we arrived on Sunday I asked about room 127. The person at the front desk remembered us and even though it wasn’t quite ready, she was able to get us into the room, saying it was coincidentally the only room on the first floor still available as they were sold out for the night. Room 127 is almost like home to us when we’re in Detroit.
My daughter loves the food at the cafe in the hotel, which my husband and I aren’t that keen on. This time it had been several months since we’d been and there was a potentially catastrophic change at the hotel—the Cafe had changed all their food. That meant the rather meh pizza my daughter loves was no longer available. And the chocolate chip muffin she looks forward to for breakfast wasn’t served anymore.
I rather liked the food changes, but I was afraid she would take exception to her favorite foods being gone. But she rolled with it, having a cheeseburger for dinner and some banana nut bread for breakfast. And since she rarely finishes anything, this worked for me as I had something to eat that I didn’t consume just to keep from wasting food.
We’ve left Detroit now without a known return date, but we’ll go even sometime in the future I’m sure given the state of my daughter’s eyes.
The Big Boy Update: After dinner tonight my son said to me, “this is how I throw a baseball”. And then he showed me a great baseball throw from stance to follow-through. He’s been to one baseball game, but he picked it up without ease. We might need to look into getting him onto a team if he keeps up this level of interest.
The Tiny Girl Chronicles: My daughter has been very understanding about the new drops we have to do six times a day. As I’m wriiting this I’m realizing we’re a round of drops behind. Her new grey drops are yellow and viscous but apparently they don’t sting because she’s not bothered by then at all.
Monday, July 16, 2018
Edema
My daughter didn’t have eye surgery today, which I suppose is a good thing. Less surgeries on the eyes as a whole is a better thing. But something is causing her to lose more vision. She’s got very little and she is losing a decent portion of what she’s got left.
Recently her pressure was checked in the OR and it was high, which is highly unusual for her because maintaining pressure has always been her problem. With it now high it would indicate her ciliary bodies have regenerated and are producing fluid, but we didn’t know what was causing the high pressure, and if that pressure was also causing the vision loss—and most importantly, if the vision loss was permanent.
Over the past several months we’ve decreased the steroid drops my daughter’s been using for close to three years now. At one point it was up to twelve drops per day. With the new high pressure we moved forward with reducing and then stopping the steroid drops. The good news is we’d already been dropping the frequency of drops for a number of months. We finished the steroid drops last week.
Dr. Trese had a suspicion that my daughter had edema (swelling) in her left eye. He did a dye test to see if dye accumulated in her eye later in the retina and macula, which it did. This swelling in the macula can be treated with drops…only they’re the drops we just got off of. The drops that may be contributing to the high pressure.
There is another option: an NSAID drop that will hopefully reduce the swelling over a period of weeks. But it isn’t covered by insurance. And it’s—are you ready for this—expensive. But we got the drops and are using them more then the recommended maximum times per day because there is some evidence that may help more, Dr. Trese said, and we’re not ones to miss an opportunity for a possible better outcome.
On the good news side, the pressure in both eyes is normal now. We’re going to keep her on the two pressure reducing drops for now and check back in the future. We name the drops at our house. We’ve had Pink and Red for years. We recently added Blue and Purple for pressure and as of today, VEG, or Very Expensive Grey.
The high pressure may be a result of all the debris she has in the front of her eyes called ectropion uveae. It’s the presence of pigment cells from the iris. Her irises had a massive damage done to them with the initial infection that precipitated her vision loss. All of that debris can block the drainage within the eye. There are things that can be done to help this, but for now drops make the most sense until we find out more.
In other positive news, Dr. Trese said if there was anything that was going to go wrong, this was about the best “wrong” we could have. So there’s that.
As Dr. Trese was leaving to go back to the OR he said, “her eyes are so complex and unique I think if someone were to understand everything going on in them they shouldn’t have to do their fellowship.” That’s saying a lot.
The Big Boy Update: My son went to a baseball game last night. He had a good time and today decided he wanted his own baseball jersey. So he got his brand new, Imagine Dragons white t-shirt and a black sharpie and added some vertical stripes. My husband wasn’t thrilled. I thought it was sort of creative, but if I’d been home when it happened I might have felt differently.
The Tiny Girl Chronicles: On the way back to the hotel from the hospital today, my daughter asked me when it was that she could see out of her right eye. I told her before she was four. She said she didn’t remember it at all. The she said she wanted to go back to one or two or three. I asked her why, thinking it would be because she could see more, but she gave the answer I realized her play therapist wouldn’t have been surprised at all about. She said, “back when there were no doctors or hospitals.”
Recently her pressure was checked in the OR and it was high, which is highly unusual for her because maintaining pressure has always been her problem. With it now high it would indicate her ciliary bodies have regenerated and are producing fluid, but we didn’t know what was causing the high pressure, and if that pressure was also causing the vision loss—and most importantly, if the vision loss was permanent.
Over the past several months we’ve decreased the steroid drops my daughter’s been using for close to three years now. At one point it was up to twelve drops per day. With the new high pressure we moved forward with reducing and then stopping the steroid drops. The good news is we’d already been dropping the frequency of drops for a number of months. We finished the steroid drops last week.
Dr. Trese had a suspicion that my daughter had edema (swelling) in her left eye. He did a dye test to see if dye accumulated in her eye later in the retina and macula, which it did. This swelling in the macula can be treated with drops…only they’re the drops we just got off of. The drops that may be contributing to the high pressure.
There is another option: an NSAID drop that will hopefully reduce the swelling over a period of weeks. But it isn’t covered by insurance. And it’s—are you ready for this—expensive. But we got the drops and are using them more then the recommended maximum times per day because there is some evidence that may help more, Dr. Trese said, and we’re not ones to miss an opportunity for a possible better outcome.
On the good news side, the pressure in both eyes is normal now. We’re going to keep her on the two pressure reducing drops for now and check back in the future. We name the drops at our house. We’ve had Pink and Red for years. We recently added Blue and Purple for pressure and as of today, VEG, or Very Expensive Grey.
The high pressure may be a result of all the debris she has in the front of her eyes called ectropion uveae. It’s the presence of pigment cells from the iris. Her irises had a massive damage done to them with the initial infection that precipitated her vision loss. All of that debris can block the drainage within the eye. There are things that can be done to help this, but for now drops make the most sense until we find out more.
In other positive news, Dr. Trese said if there was anything that was going to go wrong, this was about the best “wrong” we could have. So there’s that.
As Dr. Trese was leaving to go back to the OR he said, “her eyes are so complex and unique I think if someone were to understand everything going on in them they shouldn’t have to do their fellowship.” That’s saying a lot.
The Big Boy Update: My son went to a baseball game last night. He had a good time and today decided he wanted his own baseball jersey. So he got his brand new, Imagine Dragons white t-shirt and a black sharpie and added some vertical stripes. My husband wasn’t thrilled. I thought it was sort of creative, but if I’d been home when it happened I might have felt differently.
The Tiny Girl Chronicles: On the way back to the hotel from the hospital today, my daughter asked me when it was that she could see out of her right eye. I told her before she was four. She said she didn’t remember it at all. The she said she wanted to go back to one or two or three. I asked her why, thinking it would be because she could see more, but she gave the answer I realized her play therapist wouldn’t have been surprised at all about. She said, “back when there were no doctors or hospitals.”
Sunday, July 15, 2018
The Twenty-Five Year Thank You
I got a text tonight from an unknown number. It was a picture of a shoe bag with the logo from my college on it and the message, “a long overdue thank you for a gift that still gets used twenty-five years later.”
I didn’t recognize the bag and I didn’t remember giving anyone a shoe bag from my college so I hedged on my response. Then I got back, “not even a guess who this is? That LaRose etiquette.” Well, LaRose is my mother’s name, so the person knew my mother, but I still had no idea on who it was until he told me it was Jason.
And I was floored. It was an old boyfriend from when I was in my twenties. He and I had kept up for a few years after parting ways but had lost touch as he’d moved away for a different job. Once I realized who it was we started a flurry of texting, asking each other how things were going in each other’s lives. He mentioned a few minutes he had discovered he had a degenerative eye issue. I said I had eye issues on this end as well.
Deciding it was too much to type through, we got on the phone. Same voice. Same laugh. It was like no time had past. He was always a happy person and still was, despite having a rare, possibly unique retinal issue he regularly traveled around the country to have checked by experts in the field (sound familiar?).
He and I talked all about vision, discussing his situation and my daughter’s and their similarities. We got into braille and how he had considered learning it as he will eventually be blind but that he was dissuaded from doing so because of the technology available.
I told him all about my children and husband. He told me about his wife who is now his ex-wife and his current girlfriend. We both asked about each other’s parents, whom we’d gotten to know well when we had dated. We caught up on friends we had had in common when we were together. He has a grown daughter now and some of our mutual friends have children in college. Has it been that long? Has that much time really passed?
What was the most striking to me was our general outlooks on life. We were young when we dated, but we both seem to have evolved to the same place in thinking about life. He said something that was singular to me, because it’s the same thing I believe and say to people: we all have our things. In my case, I have a bad spine and a blind child, everything else in my life I can’t complain about. When he found out he was going to be blind in the future he said it knocked him back for about three weeks but he got over it and moved forward. It reminded me of what it felt like when my daughter’s vision loss happened. It was awful at first and remains ever present, but it’s not insurmountable. And there is more to life to be happy about.
We laughed so many times on the phone I can’t count. I think we could have caught up for several more hours but it was getting late and I had to put my daughter to bed. He said he comes to our area for basketball games. We planned to get together at some point in the future, perforable before more than twenty-five years passes again again.
The Big Boy Update: My son came downstairs this morning and said, “I made this for you, mom.” He’s made many things with the Tubation tubes before, mostly in the gun and sword vein. This is the first time he’s made a heart.
The Tiny Girl Chronicles: My daughter and I are in Detroit today for an EUA with her retina surgeon tomorrow. She and I had a nice day traveling, eating chocolate and ending the night having Krispy Kreme donuts at 9:30 at night before she had to stop eating due to the upcoming procedure. She likes coming to Detroit, maybe it’s because of all the sugar.
I didn’t recognize the bag and I didn’t remember giving anyone a shoe bag from my college so I hedged on my response. Then I got back, “not even a guess who this is? That LaRose etiquette.” Well, LaRose is my mother’s name, so the person knew my mother, but I still had no idea on who it was until he told me it was Jason.
And I was floored. It was an old boyfriend from when I was in my twenties. He and I had kept up for a few years after parting ways but had lost touch as he’d moved away for a different job. Once I realized who it was we started a flurry of texting, asking each other how things were going in each other’s lives. He mentioned a few minutes he had discovered he had a degenerative eye issue. I said I had eye issues on this end as well.
Deciding it was too much to type through, we got on the phone. Same voice. Same laugh. It was like no time had past. He was always a happy person and still was, despite having a rare, possibly unique retinal issue he regularly traveled around the country to have checked by experts in the field (sound familiar?).
He and I talked all about vision, discussing his situation and my daughter’s and their similarities. We got into braille and how he had considered learning it as he will eventually be blind but that he was dissuaded from doing so because of the technology available.
I told him all about my children and husband. He told me about his wife who is now his ex-wife and his current girlfriend. We both asked about each other’s parents, whom we’d gotten to know well when we had dated. We caught up on friends we had had in common when we were together. He has a grown daughter now and some of our mutual friends have children in college. Has it been that long? Has that much time really passed?
What was the most striking to me was our general outlooks on life. We were young when we dated, but we both seem to have evolved to the same place in thinking about life. He said something that was singular to me, because it’s the same thing I believe and say to people: we all have our things. In my case, I have a bad spine and a blind child, everything else in my life I can’t complain about. When he found out he was going to be blind in the future he said it knocked him back for about three weeks but he got over it and moved forward. It reminded me of what it felt like when my daughter’s vision loss happened. It was awful at first and remains ever present, but it’s not insurmountable. And there is more to life to be happy about.
We laughed so many times on the phone I can’t count. I think we could have caught up for several more hours but it was getting late and I had to put my daughter to bed. He said he comes to our area for basketball games. We planned to get together at some point in the future, perforable before more than twenty-five years passes again again.
The Big Boy Update: My son came downstairs this morning and said, “I made this for you, mom.” He’s made many things with the Tubation tubes before, mostly in the gun and sword vein. This is the first time he’s made a heart.
The Tiny Girl Chronicles: My daughter and I are in Detroit today for an EUA with her retina surgeon tomorrow. She and I had a nice day traveling, eating chocolate and ending the night having Krispy Kreme donuts at 9:30 at night before she had to stop eating due to the upcoming procedure. She likes coming to Detroit, maybe it’s because of all the sugar.
Saturday, July 14, 2018
Double Packed
I’ve been packing for what seems like days. It hasn’t been, but it feels like it. Ultimately, the total amount of things we’re taking on vacation is very small, which was rather the point in the first place. I don’t like over packing. And I’m not fond of under packing—especially when it means I forgot something I should have known better than to forget.
It’s taken me so long to pack because I can’t keep at it for more than ten minutes without something interrupting me. Usually this something involves the word, “mom!” and lots of times is followed by, “Greyson just…” That, or one of a dozen other things not child-related.
I’m packing for a double trip: two days in Detroit with only minimal things, sending the remainder with my husband and son as they drive up to New Jersey for. our summer beach vacation with my brother- and sister-in-law’s family.
I think I’ve got everything about done though. I’m leaving a list for my husband to do with things that couldn’t be done until just before they leave. He and my son will have two days together while my daughter and I are in Detroit for an EUA to see what’s happening with her eyes.
The Big Boy Update: If you’d told me a year ago my son would love dancing, I would have laughed at you. Only now he does. But specific dances: those the characters in Fortnite do. He’s really pretty good at them. People who know the game recognize what he’s doing.
The Tiny Girl Chronicles: When we were out on the boat at my in-laws over the fourt-of-July, my mother-in-law had asked my husband to lower the boat ladder on the side of the boat. As he was doing this fairly easy task my daughter called, “that’s my boy!” to dad. It was so cute. I don’t know where she got it from. Do I say that?
It’s taken me so long to pack because I can’t keep at it for more than ten minutes without something interrupting me. Usually this something involves the word, “mom!” and lots of times is followed by, “Greyson just…” That, or one of a dozen other things not child-related.
I’m packing for a double trip: two days in Detroit with only minimal things, sending the remainder with my husband and son as they drive up to New Jersey for. our summer beach vacation with my brother- and sister-in-law’s family.
I think I’ve got everything about done though. I’m leaving a list for my husband to do with things that couldn’t be done until just before they leave. He and my son will have two days together while my daughter and I are in Detroit for an EUA to see what’s happening with her eyes.
The Big Boy Update: If you’d told me a year ago my son would love dancing, I would have laughed at you. Only now he does. But specific dances: those the characters in Fortnite do. He’s really pretty good at them. People who know the game recognize what he’s doing.
The Tiny Girl Chronicles: When we were out on the boat at my in-laws over the fourt-of-July, my mother-in-law had asked my husband to lower the boat ladder on the side of the boat. As he was doing this fairly easy task my daughter called, “that’s my boy!” to dad. It was so cute. I don’t know where she got it from. Do I say that?
Friday, July 13, 2018
Homework
My son is doing a bit of catching up this summer with some homework. Or rather I’m not certain if it’s catching up or to give him a boost at the start of the school year. Or maybe it’s not that at all as his teacher said all the students have work they’ve been sent to do over the summer. Either way, every day he spends a little bit of time doing schoolwork.
He’s being rewarded for his work with stamps, which he can use as currency to buy things. Depending on the day or his mood, the lure of stamps can be a driving force all the way to negligible. If my son would sit down and put his mind to the work, he could be done very quickly, but some days it goes more slowly.
He’s making progress though. The work is all reading, writing and following directions-based. He’s able to read much more quickly now and his writing skills have improved where he isn’t tired by longer amounts of written parts of the assignments.
Yesterday he celebrated finishing the first workbook. He’s been working on another workbook at the same time and he’s a little over a week from finishing that one as well. He does feel a nice sense of accomplishment from getting the work completed. It’s doing it that he’s not so keen on.
His sister is rather the opposite. She wants to do homework. Asks for it and then asks for more when she’s completed the first set I’ve given her. Her braillest prepared more work for her last school year than her class got to, so she sent it home for the summer in case my daughter was interested.
And boy, is she interested. I’ve had to hide the folders so she doesn’t do them all in one day. When she’s presented with a lot of work she gets excited about doing it and doesn’t do it thoroughly. Today she found my hiding place though. It was in my standard spot on the counter, but she can’t see it so I didn’t expect her to find it. I suspect she enlisted her brother for help though. I came into the dining room to find her with two works selected, laid out on the table and the colored pencils ready to start.
The Big Boy Update: I asked my son to hand me something from the drawer last night. He told me, “get your own stuff. It’s not like I’m your assistant.” I couldn’t help but laugh. I told him I liked that phrase and to beware, I was going to be using it on him in the future.
The Tiny Girl Chronicles: Over the Fourth of July holiday we were visiting my in-laws. I came into their kitchen and some music was playing from their Amazon Echo speaker. I told my father-in-law I liked the atmosphere music. He said my daughter had selected it. He told me she said, “Alexa, play some nice music.” Alexa responded with, “Here’a playlist you might like: Classical Folk Music”.
He’s being rewarded for his work with stamps, which he can use as currency to buy things. Depending on the day or his mood, the lure of stamps can be a driving force all the way to negligible. If my son would sit down and put his mind to the work, he could be done very quickly, but some days it goes more slowly.
He’s making progress though. The work is all reading, writing and following directions-based. He’s able to read much more quickly now and his writing skills have improved where he isn’t tired by longer amounts of written parts of the assignments.
Yesterday he celebrated finishing the first workbook. He’s been working on another workbook at the same time and he’s a little over a week from finishing that one as well. He does feel a nice sense of accomplishment from getting the work completed. It’s doing it that he’s not so keen on.
His sister is rather the opposite. She wants to do homework. Asks for it and then asks for more when she’s completed the first set I’ve given her. Her braillest prepared more work for her last school year than her class got to, so she sent it home for the summer in case my daughter was interested.
And boy, is she interested. I’ve had to hide the folders so she doesn’t do them all in one day. When she’s presented with a lot of work she gets excited about doing it and doesn’t do it thoroughly. Today she found my hiding place though. It was in my standard spot on the counter, but she can’t see it so I didn’t expect her to find it. I suspect she enlisted her brother for help though. I came into the dining room to find her with two works selected, laid out on the table and the colored pencils ready to start.
The Big Boy Update: I asked my son to hand me something from the drawer last night. He told me, “get your own stuff. It’s not like I’m your assistant.” I couldn’t help but laugh. I told him I liked that phrase and to beware, I was going to be using it on him in the future.
The Tiny Girl Chronicles: Over the Fourth of July holiday we were visiting my in-laws. I came into their kitchen and some music was playing from their Amazon Echo speaker. I told my father-in-law I liked the atmosphere music. He said my daughter had selected it. He told me she said, “Alexa, play some nice music.” Alexa responded with, “Here’a playlist you might like: Classical Folk Music”.
Thursday, July 12, 2018
Blindfolded
My children are at rock climbing camp this week. My daughter was interested in rock climbing first; it’s movement, which she loves, and she likes anything physical she can do safely. My daughter has been to week long camps during track-out while her brother was in school. My son was interested in going after hearing all about it from his sister so we sent them both for one on one of the holiday weekends. That was so much fun they asked to do more camps this summer.
There has been no complaints from them about camp this week aside from not wanting to leave at the end of the day. It’s been the only thing that’s worn my daughter out, with her falling asleep two nights this week around dinner time.
There are challenges they have during the week: certain difficulties in climbing paths, for instance. And then there’s the blindfolded challenge. I was picking the children up earlier this week when one child came over and asked to have a bandana wrapped around her eyes. I asked about it and found out if you climbed to the top blindfolded you met one of the challenges.
I got to talking to the girl and when she realized I was Reese’s mother she said to me, “I heard Reese is colorblind.” I told her that was true, but it was more than that, she was actually blind.” She was interested and asked me a few questions. I answered them and then said, “it’s hard for her to tell where things are so it’s always nice when people help her. You can take her by the hand and show her where to go safely.” She said, “I want to help her; she’s a really good climber.”
This morning as we were getting in the car to go to camp I asked my daughter if she’d done the blindfolded challenge yet. She replied, “no. Do you know why? Because I’m blind!” She laughed. And then she said, “I made a joke about it yesterday.”
This is the first time I’ve ever heard her refer to herself as blind. She wasn’t bothered by it and was even proud of herself for making the joke. We try to not make her seem different or special, but there are places and times where there is a difference—and I wonder all the time if it bothers her. In this case it seems like it didn’t.
The Big Boy Update: My son has made a lot of friends this week at rock climbing camp. I came in and told him I’d belay him on a few climbs if he wanted me to. But no, he was busy with his camp friends. He’s had some socialization issues in the past so it was nice to watch him interacting with the other boys so easily.
The Tiny Girl Chronicles: My daughter informed us the other day she wanted to be a vegetarian—except for meatballs.
There has been no complaints from them about camp this week aside from not wanting to leave at the end of the day. It’s been the only thing that’s worn my daughter out, with her falling asleep two nights this week around dinner time.
There are challenges they have during the week: certain difficulties in climbing paths, for instance. And then there’s the blindfolded challenge. I was picking the children up earlier this week when one child came over and asked to have a bandana wrapped around her eyes. I asked about it and found out if you climbed to the top blindfolded you met one of the challenges.
I got to talking to the girl and when she realized I was Reese’s mother she said to me, “I heard Reese is colorblind.” I told her that was true, but it was more than that, she was actually blind.” She was interested and asked me a few questions. I answered them and then said, “it’s hard for her to tell where things are so it’s always nice when people help her. You can take her by the hand and show her where to go safely.” She said, “I want to help her; she’s a really good climber.”
This morning as we were getting in the car to go to camp I asked my daughter if she’d done the blindfolded challenge yet. She replied, “no. Do you know why? Because I’m blind!” She laughed. And then she said, “I made a joke about it yesterday.”
This is the first time I’ve ever heard her refer to herself as blind. She wasn’t bothered by it and was even proud of herself for making the joke. We try to not make her seem different or special, but there are places and times where there is a difference—and I wonder all the time if it bothers her. In this case it seems like it didn’t.
The Big Boy Update: My son has made a lot of friends this week at rock climbing camp. I came in and told him I’d belay him on a few climbs if he wanted me to. But no, he was busy with his camp friends. He’s had some socialization issues in the past so it was nice to watch him interacting with the other boys so easily.
The Tiny Girl Chronicles: My daughter informed us the other day she wanted to be a vegetarian—except for meatballs.
Wednesday, July 11, 2018
Ubered
Today I did something I’d never done before: I used Uber. I’ve ridden in, how is it you say it, “an Uber”? Who knows, at any rate, I’ve been in Uber rides before but I’ve never installed the app or called an Uber ride myself. Heck, my father, who’s in his eighties, uses Uber. I just hadn’t gotten around to it.
I was having my car cleaned for our upcoming trip to visit my brother-in-law’s family. My husband had dropped me off at my next stop but was then busy doing work with a client—a very slow client that takes a long time to look at each house due to the husband having a walker—so there was no relying on him to get me home. So I installed the app.
I was two miles from home and it was mid-day during a weekday. I had no idea how long I’d have to wait for a ride to arrive but the six minute prediction was almost faster than I could get out of the store and wait in the parking lot.
I got home and messaged the shop to find out if my car could be ready early so I could get to a meeting for my son’s school and they said they could swing it. I had had fun talking to my Uber driver the first time so I called another Uber and was over to pick up the car fifteen minutes later.
Honestly, why haven’t I don’t Uber before now?
The Big Boy Update: Uncle Jonathan and Margaret came to visit this afternoon. My son was very excited to show Uncle Jonathan Fortnite. Fortunately, Uncle Jonathan had brought his Nintendo Switch with him so the two of them could log in and play together. They loaded up Playground mode and my son proceeded to tell Uncle Jonathan everything he needed to know about the game (as seem through the eyes of a seven-year-old). The one thing my son didn’t like was when Uncle Jonathan would shoot him from time to time. That wasn’t what he was suppose to be doing. Only then he’d as Uncle Jonathan to stand still as he pulled out his purple sniper rifle so he could shoot him In the head.
The Tiny Girl Chronicles: I had an idea today. I connected my daughter’s Orbit braille machine to my iPhone. She’s been wanting to type a lot and I told her maybe she could send text messages. I brought up the message chain with her Braillest and she typed, “This is Reese. I want to see you.” She knew how to backspace and correct errors and how to confirm the line (which was the same thing as pressing send for the message. Then she wanted to send Nana and Mimi messages. As she was typing her second message to Nana, my mother-in-law started to respond. The phone (with Voiceover currently enabled) spoke to her and said, “Nancy is typing”. My daughter said in an excited voice, “whaaaaaat?!?” I told her Nana was responding, that that’s how text messages worked sometimes. She and Nana had a short conversation and then she did the same thing with Mimi. It was so exciting to watch. My blind child who can’t see anything at all on the phone was typing messages and responding to people.
I was having my car cleaned for our upcoming trip to visit my brother-in-law’s family. My husband had dropped me off at my next stop but was then busy doing work with a client—a very slow client that takes a long time to look at each house due to the husband having a walker—so there was no relying on him to get me home. So I installed the app.
I was two miles from home and it was mid-day during a weekday. I had no idea how long I’d have to wait for a ride to arrive but the six minute prediction was almost faster than I could get out of the store and wait in the parking lot.
I got home and messaged the shop to find out if my car could be ready early so I could get to a meeting for my son’s school and they said they could swing it. I had had fun talking to my Uber driver the first time so I called another Uber and was over to pick up the car fifteen minutes later.
Honestly, why haven’t I don’t Uber before now?
The Big Boy Update: Uncle Jonathan and Margaret came to visit this afternoon. My son was very excited to show Uncle Jonathan Fortnite. Fortunately, Uncle Jonathan had brought his Nintendo Switch with him so the two of them could log in and play together. They loaded up Playground mode and my son proceeded to tell Uncle Jonathan everything he needed to know about the game (as seem through the eyes of a seven-year-old). The one thing my son didn’t like was when Uncle Jonathan would shoot him from time to time. That wasn’t what he was suppose to be doing. Only then he’d as Uncle Jonathan to stand still as he pulled out his purple sniper rifle so he could shoot him In the head.
The Tiny Girl Chronicles: I had an idea today. I connected my daughter’s Orbit braille machine to my iPhone. She’s been wanting to type a lot and I told her maybe she could send text messages. I brought up the message chain with her Braillest and she typed, “This is Reese. I want to see you.” She knew how to backspace and correct errors and how to confirm the line (which was the same thing as pressing send for the message. Then she wanted to send Nana and Mimi messages. As she was typing her second message to Nana, my mother-in-law started to respond. The phone (with Voiceover currently enabled) spoke to her and said, “Nancy is typing”. My daughter said in an excited voice, “whaaaaaat?!?” I told her Nana was responding, that that’s how text messages worked sometimes. She and Nana had a short conversation and then she did the same thing with Mimi. It was so exciting to watch. My blind child who can’t see anything at all on the phone was typing messages and responding to people.
Tuesday, July 10, 2018
Eighteen Dollars Worth
My husband picked the children up early from rock climbing camp this afternoon to take them to their Integrative Therapist (otherwise known as a life coach). The children had back-to-back sessions with Liz which left the question of what my husband would do with the one child while the other child was in session.
We had some things we needed from the grocery store and since there was a Whole Foods right by her office, that’s where my husband and son went while my daughter took the first hour. I called him a bit after they had gotten to the store and heard my son’s very happy and boisterous voice in the background.
While my husband and I talked about potential dinner plans we were interrupted as my husband told my son that no, we didn’t need more than five pounds of apples or that we already had blackberries at home or that he wasn’t sure where the mangos were, etc. Apparently my son wasn’t in a good mood, probably due to missing snack at camp, but his mood changed as soon as he had the sugar influx of gelato from Whole Foods.
Dinner’s main item had been decided already by my son, I was told, who had selected swordfish. I don’t think my son had had swordfish before but it’s my husband’s favorite fish, so there could have been influence on selection. But it mattered not, swordfish we were having.
When the children got home they went out on the deck and shucked the corn ears, being sent back multiple times to get all the silks off. My husband was going back and forth to the iPad, working on seasonings (which he nailed as there were zero leftovers).
My son started eating before the rest of us, asking for a plate of swordfish for, “my first plate”. By the time the rest of us were served my son was through his broccoli and his second round of swordfish and was asking for more. I gave him half of mine while my husband said to my son, “I think you’ve eaten eighteen dollars of swordfish already; save some for the rest of us.”
Whole Foods has good fish, although it can be more expensive. But I think if you asked my son he’d tell you it was worth it.
The Big Boy Update: My husband told my son at dinner to lean over the table when he ate so he didn’t get his brand new shirt dirty. My son, who was wearing his Imagine Dragon’s concert t-shirt from last Thursday replied, “it’s not brand new. It’s a week old.”
The Tiny Girl Chronicle: My daughter was so angry at dinner. Irrational angry and not thinking straight. She stormed off from the table and complained about where her purple ball was. She loves the purple ball. After she found it she bitterly complained about still being hungry. We were offering her options but she wasn’t responding. I didn’t wouldn’t have thought it was possible, but she’d fallen asleep on the ball. She stayed asleep while we cleaned up dinner around her, making all sorts of clattering noises. I carried her upstairs to bed when we were done.
We had some things we needed from the grocery store and since there was a Whole Foods right by her office, that’s where my husband and son went while my daughter took the first hour. I called him a bit after they had gotten to the store and heard my son’s very happy and boisterous voice in the background.
While my husband and I talked about potential dinner plans we were interrupted as my husband told my son that no, we didn’t need more than five pounds of apples or that we already had blackberries at home or that he wasn’t sure where the mangos were, etc. Apparently my son wasn’t in a good mood, probably due to missing snack at camp, but his mood changed as soon as he had the sugar influx of gelato from Whole Foods.
Dinner’s main item had been decided already by my son, I was told, who had selected swordfish. I don’t think my son had had swordfish before but it’s my husband’s favorite fish, so there could have been influence on selection. But it mattered not, swordfish we were having.
When the children got home they went out on the deck and shucked the corn ears, being sent back multiple times to get all the silks off. My husband was going back and forth to the iPad, working on seasonings (which he nailed as there were zero leftovers).
My son started eating before the rest of us, asking for a plate of swordfish for, “my first plate”. By the time the rest of us were served my son was through his broccoli and his second round of swordfish and was asking for more. I gave him half of mine while my husband said to my son, “I think you’ve eaten eighteen dollars of swordfish already; save some for the rest of us.”
Whole Foods has good fish, although it can be more expensive. But I think if you asked my son he’d tell you it was worth it.
The Big Boy Update: My husband told my son at dinner to lean over the table when he ate so he didn’t get his brand new shirt dirty. My son, who was wearing his Imagine Dragon’s concert t-shirt from last Thursday replied, “it’s not brand new. It’s a week old.”
The Tiny Girl Chronicle: My daughter was so angry at dinner. Irrational angry and not thinking straight. She stormed off from the table and complained about where her purple ball was. She loves the purple ball. After she found it she bitterly complained about still being hungry. We were offering her options but she wasn’t responding. I didn’t wouldn’t have thought it was possible, but she’d fallen asleep on the ball. She stayed asleep while we cleaned up dinner around her, making all sorts of clattering noises. I carried her upstairs to bed when we were done.
Monday, July 9, 2018
Numbed to It
My daughter is losing more vision. It’s confusing because we don’t know why it’s happening. But that’s not new—anything that happens to my daughter’s eyes is confusing, unpredictable and it doesn’t follow a typical path of progression. Her eyes are just an unknown.
When she first had the retinal detachment, the “inciting event” that was an infection coupled with malformed eyes, that caused the main insult to her eyes, I was in fight mode. Fight to do everything we can to get her eyes “fixed”. We were told the situation was serious, but I thought it would be fixable. No one said it couldn’t be, but it wasn’t looking good. Still, I was completely hopeful. Scared, but hopeful.
Then we saw Dr. Trese for the first time in December of 2015. I remember asking him how much vision he thought she could get back. In his calm, assured manner he said, “I’m hoping we don’t lose any more.”
That took a bit to settle in. And it was depressing. I was depressed for a while. Not a long while, but it was rough, imagining a world in which I couldn’t see—my daughter couldn’t see—and I couldn’t do anything to fix it. But I got over it and accepted my daughter’s fate and vowed to fight it again and again for as long as there was a fight to be had. Because there was no other choice. Because that’s what parents do for their children.
That wasn’t the only time my daughter’s vision changed. I’ve had to fight to be her advocate many times. Fortunately we have some tremendously kind and responsive doctors and medical practitioners we’re working with that come to our aid when we need it. But it’s hard. Every time something happens and things get worse.
Right now my daughter’s vision is declining again. It has been for a few months. She can’t find doorways in our own house now and is getting lost moving around depending on lighting. It’s so scary. And yet I’m calm. I’m not upset. Is it because it’s happened so many times since August 2015 that by now I’m just emotionally numbed to it?
I still fight for her. I will never stop fighting. She’s my girl. Now if only I can learn to read braille…
The Big Boy Update: My son sings now. He likes singing, hums to himself and makes up songs. Last year he would have found singing totally uncool but thanks to his music teacher at school he’s grown to appreciate it.
The Tiny Girl Chronicles: We got a pressure reading of my daughter’s eyes today in her eye doctor’s office. Which is a crazy great accomplishment because she has a visceral response to having her eye pressure taken, even though it doesn’t hurt in the slightest. I told them (when she wasn’t listening) that we were going to flat out lie to her and tell her we were looking at the color of her eyes or something else so she could have a successful pressure reading. Which worked and she did well and afterwards we told her what we’d done and how great she was. Now, going forward, I hope she’ll be more relaxed about having her pressure taken.
When she first had the retinal detachment, the “inciting event” that was an infection coupled with malformed eyes, that caused the main insult to her eyes, I was in fight mode. Fight to do everything we can to get her eyes “fixed”. We were told the situation was serious, but I thought it would be fixable. No one said it couldn’t be, but it wasn’t looking good. Still, I was completely hopeful. Scared, but hopeful.
Then we saw Dr. Trese for the first time in December of 2015. I remember asking him how much vision he thought she could get back. In his calm, assured manner he said, “I’m hoping we don’t lose any more.”
That took a bit to settle in. And it was depressing. I was depressed for a while. Not a long while, but it was rough, imagining a world in which I couldn’t see—my daughter couldn’t see—and I couldn’t do anything to fix it. But I got over it and accepted my daughter’s fate and vowed to fight it again and again for as long as there was a fight to be had. Because there was no other choice. Because that’s what parents do for their children.
That wasn’t the only time my daughter’s vision changed. I’ve had to fight to be her advocate many times. Fortunately we have some tremendously kind and responsive doctors and medical practitioners we’re working with that come to our aid when we need it. But it’s hard. Every time something happens and things get worse.
Right now my daughter’s vision is declining again. It has been for a few months. She can’t find doorways in our own house now and is getting lost moving around depending on lighting. It’s so scary. And yet I’m calm. I’m not upset. Is it because it’s happened so many times since August 2015 that by now I’m just emotionally numbed to it?
I still fight for her. I will never stop fighting. She’s my girl. Now if only I can learn to read braille…
The Big Boy Update: My son sings now. He likes singing, hums to himself and makes up songs. Last year he would have found singing totally uncool but thanks to his music teacher at school he’s grown to appreciate it.
The Tiny Girl Chronicles: We got a pressure reading of my daughter’s eyes today in her eye doctor’s office. Which is a crazy great accomplishment because she has a visceral response to having her eye pressure taken, even though it doesn’t hurt in the slightest. I told them (when she wasn’t listening) that we were going to flat out lie to her and tell her we were looking at the color of her eyes or something else so she could have a successful pressure reading. Which worked and she did well and afterwards we told her what we’d done and how great she was. Now, going forward, I hope she’ll be more relaxed about having her pressure taken.
Sunday, July 8, 2018
Downtown
We were headed downtown this weekend while Uncle Bob was visiting. The adults were talking away, like we always do, and the children were talking away, like they always do too. We talk on top of each other a lot and do a decent bit of interrupting all around (something we need to work on as a family) when my children had an interesting observation.
My daughter said, “wait, do we live in a town?” We told her we lived in a city, not a town. We explained how a town was smaller and a city was bigger. We gave her a lot more information than she needed because her question was triggered by something we said: “we’re going downtown.”
My son asked if we lived in a city, why it was called ‘downtown’. It’s one of those very logical child questions about terminology or language we don’t even see as adults. We tried saying, ‘downcity’ and all agreed ‘downtown’ sounded nicer.
I love how children see the world without filters.
The Big Boy Tiny Girl Zoo: There was a lot of commotion upstairs this morning. There were multiple children visiting from other houses. We didn’t have any idea what was going on until my husband went upstairs and took a picture of the zoo they’d made in their room.
My daughter said, “wait, do we live in a town?” We told her we lived in a city, not a town. We explained how a town was smaller and a city was bigger. We gave her a lot more information than she needed because her question was triggered by something we said: “we’re going downtown.”
My son asked if we lived in a city, why it was called ‘downtown’. It’s one of those very logical child questions about terminology or language we don’t even see as adults. We tried saying, ‘downcity’ and all agreed ‘downtown’ sounded nicer.
I love how children see the world without filters.
The Big Boy Tiny Girl Zoo: There was a lot of commotion upstairs this morning. There were multiple children visiting from other houses. We didn’t have any idea what was going on until my husband went upstairs and took a picture of the zoo they’d made in their room.
Saturday, July 7, 2018
Orbit
My daughter came home a while back talking about something I figured out was a refreshable braille display. I had heard of them but hadn’t seen one but apparently she was using one at school. She types all the time on her braille machine, but that’s standalone for the most part. She’ll be using that a lot for school, but she’s also going to be learning other technologies as well.
A refreshable braille display lets you read braille one row of twenty characters at a time. You read the first twenty characters and then press next and the next twenty are presented to you. This works for lots and lots of things. You can connect it to a phone or iPad and it will send the words there to the display. You can have it send books or other text to it.
The iPad (phone or other tablet) sounds a bit difficult to envision. I couldn’t picture it either as a complete solution at first but it’s coupled with something called, “Voiceover” which is an accessibility option that speaks anything and everything on the screen and changes navigation so you don’t have to see anything at all to move around. It’s hard to explain and honestly even harder to use because we see things and can go the much faster route of going directly to what we want on the screen. But this is a blog post topic for another day. Suffice it to say there is great software out there to help visually impaired people.
Back to the Orbit. My daughter talked about this refreshable braille display and I didn’t think much of it because they’re very expensive. Except there was a new one, developed with government and foundation funding that put the orbit in the price range of a low-end iPad. When I heard this I ordered one, sight unseen. But it was backordered we found out.
My daughter has been waiting for the mail to come every day, asking if packages were her Orbit. She, too, has never used one because they’re really new, but she’d used the predecessor and she was excited. And today a package was at the front door. I looked and excitedly told her it was her Orbit. She and I opened the package and then she took over.
She knew how to turn it on and what to do next. The only content on the SD card included was the user manual, which wasn’t that interesting to her, but she spelled out words and serial number to me. When the doorbell rang I told her to go play with her friends and I’d see if I could get it figured out before she came back inside.
Three minutes later, my initial confidence in feeling I knew a few things about the Orbit had waned, because I suddenly realized I was in over my head. I had pulled up the manual online which was all well and good since it was in printed text. The Orbit has none of that. It has a single row of twenty braille cells that give you every piece of information you need. Where you are, what the menu choices are, what options you can select—everything—in braille. And I don’t read braille.
I got the braille alphabet card and contracted braille word list out and struggled through finding the settings menu. The online manual helped me to get to the content on the SD card, but since I didn’t know what files were there I abandoned that for a while and worked on bluetooth pairing the Orbit to my daughter’s iPad.
I’ve bluetooth paired a whole lot of devices together in my day but this one was unexpected. It wasn’t a traditional bluetooth pairing but an accessibility/keyboard/braille reader bluetooth pairing under the accessibility settings on her iPad. And that should have clued me into to the next thing that happened—but it didn’t.
I opened the Notes app and created a new note and then turned voiceover on. And the little braille display started clicking and refreshing and showing the text I was hearing spoken on the iPad. I wanted to type something in the notes app to see if I could get it to show up on the Orbit, but I couldn’t get the keyboard to appear. And that was strange. It was just gone. I toggled voiceover off and then like magic, the keyboard appeared again. I turned voiceover back on and the keyboard went away again and then it hit me: the keyboard was the Orbit.
I pulled up my braille alphabet sheet and pitifully slowly typed my name, heard it speak the letters and then display the name on the iPad when I pressed the space bar. And I was thrilled. Seriously, this was cool stuff, I was thinking. About this time, my daughter and her friends from the street came in and I called them to the bedroom where I was working. She took over and started typing and having text appear at a much more impressive rate to the iPad. Her friends thought it was very exciting as well.
I had to once again get her to let me have the Orbit back so I could get the other main functionality working—the ability to read books. There was one book she wanted: Goldilocks (she was non-specific about there needing to be bears) and I had been preparing to download the book when I got the Orbit in hand. But this, like the rest of the process, wasn’t straightforward.
Thankfully, one of the VI teachers had told me about Bookshare.org, which I registered for and then submitted a form from my daughter’s eye doctor to get her access to the content. But I hadn’t downloaded anything yet. I brought the SD card from the Orbit down to my computer and then found Goldilocks (with the three bears) and a few other books. How to download the file though? There are settings to choose. We had a twenty-character braille display and my daughter has started to learn contracted braille (which is sort of like shorthand braille).
I put the files on the SD card and then went back upstairs to the Orbit and put the card in. I had looked up the key command to get to the file list on the SD card and I knew there were only five books I’d put on there which should be easy, right? Spoiler alert: it wasn’t. I brought my daughter and her friend back in and had her scroll (or what I thought was scrolling) through the file titles.
The thing is, my daughter is great with braille—but she’s only just finished kindergarten. She would read off things and we’d try another option by backing out. And then we found Goldilocks. And we figured out how to get into the file and start reading. And then we ran into more trouble.
You know in books where there are those words in tiny print after the title page that we never pay attention to and always skip? They have to be there in the braille version and let me tell you, it’s a lot of text. I finally told her I’d see if I could edit the file so we could skip straight to the story.
That was interesting. Here’s what a bit of the file looks like:
Twenty characters across, but a lot of characters I don’t understand because they’re some standardized format for contracted braille. So I went back and asked for the file to be formatted in uncontracted braille. I pulled out all the extra at the beginning and it looked like this text from Cows That Type:
And my daughter loved it. And we couldn’t get her off the Orbit for the longest time.
The Big Boy Update: My son had spent a good bit of time playing Fortnite today. My husband told him he had to take a break. My son was incensed, complaining very loudly, “but I took a break when I ate lunch!”
The Tiny Girl Chronicles: Here’s my daughter on her Orbit. You can hear the braille cells changing as she presses the next line button:
A refreshable braille display lets you read braille one row of twenty characters at a time. You read the first twenty characters and then press next and the next twenty are presented to you. This works for lots and lots of things. You can connect it to a phone or iPad and it will send the words there to the display. You can have it send books or other text to it.
The iPad (phone or other tablet) sounds a bit difficult to envision. I couldn’t picture it either as a complete solution at first but it’s coupled with something called, “Voiceover” which is an accessibility option that speaks anything and everything on the screen and changes navigation so you don’t have to see anything at all to move around. It’s hard to explain and honestly even harder to use because we see things and can go the much faster route of going directly to what we want on the screen. But this is a blog post topic for another day. Suffice it to say there is great software out there to help visually impaired people.
Back to the Orbit. My daughter talked about this refreshable braille display and I didn’t think much of it because they’re very expensive. Except there was a new one, developed with government and foundation funding that put the orbit in the price range of a low-end iPad. When I heard this I ordered one, sight unseen. But it was backordered we found out.
My daughter has been waiting for the mail to come every day, asking if packages were her Orbit. She, too, has never used one because they’re really new, but she’d used the predecessor and she was excited. And today a package was at the front door. I looked and excitedly told her it was her Orbit. She and I opened the package and then she took over.
She knew how to turn it on and what to do next. The only content on the SD card included was the user manual, which wasn’t that interesting to her, but she spelled out words and serial number to me. When the doorbell rang I told her to go play with her friends and I’d see if I could get it figured out before she came back inside.
Three minutes later, my initial confidence in feeling I knew a few things about the Orbit had waned, because I suddenly realized I was in over my head. I had pulled up the manual online which was all well and good since it was in printed text. The Orbit has none of that. It has a single row of twenty braille cells that give you every piece of information you need. Where you are, what the menu choices are, what options you can select—everything—in braille. And I don’t read braille.
I got the braille alphabet card and contracted braille word list out and struggled through finding the settings menu. The online manual helped me to get to the content on the SD card, but since I didn’t know what files were there I abandoned that for a while and worked on bluetooth pairing the Orbit to my daughter’s iPad.
I’ve bluetooth paired a whole lot of devices together in my day but this one was unexpected. It wasn’t a traditional bluetooth pairing but an accessibility/keyboard/braille reader bluetooth pairing under the accessibility settings on her iPad. And that should have clued me into to the next thing that happened—but it didn’t.
I opened the Notes app and created a new note and then turned voiceover on. And the little braille display started clicking and refreshing and showing the text I was hearing spoken on the iPad. I wanted to type something in the notes app to see if I could get it to show up on the Orbit, but I couldn’t get the keyboard to appear. And that was strange. It was just gone. I toggled voiceover off and then like magic, the keyboard appeared again. I turned voiceover back on and the keyboard went away again and then it hit me: the keyboard was the Orbit.
I pulled up my braille alphabet sheet and pitifully slowly typed my name, heard it speak the letters and then display the name on the iPad when I pressed the space bar. And I was thrilled. Seriously, this was cool stuff, I was thinking. About this time, my daughter and her friends from the street came in and I called them to the bedroom where I was working. She took over and started typing and having text appear at a much more impressive rate to the iPad. Her friends thought it was very exciting as well.
I had to once again get her to let me have the Orbit back so I could get the other main functionality working—the ability to read books. There was one book she wanted: Goldilocks (she was non-specific about there needing to be bears) and I had been preparing to download the book when I got the Orbit in hand. But this, like the rest of the process, wasn’t straightforward.
Thankfully, one of the VI teachers had told me about Bookshare.org, which I registered for and then submitted a form from my daughter’s eye doctor to get her access to the content. But I hadn’t downloaded anything yet. I brought the SD card from the Orbit down to my computer and then found Goldilocks (with the three bears) and a few other books. How to download the file though? There are settings to choose. We had a twenty-character braille display and my daughter has started to learn contracted braille (which is sort of like shorthand braille).
I put the files on the SD card and then went back upstairs to the Orbit and put the card in. I had looked up the key command to get to the file list on the SD card and I knew there were only five books I’d put on there which should be easy, right? Spoiler alert: it wasn’t. I brought my daughter and her friend back in and had her scroll (or what I thought was scrolling) through the file titles.
The thing is, my daughter is great with braille—but she’s only just finished kindergarten. She would read off things and we’d try another option by backing out. And then we found Goldilocks. And we figured out how to get into the file and start reading. And then we ran into more trouble.
You know in books where there are those words in tiny print after the title page that we never pay attention to and always skip? They have to be there in the braille version and let me tell you, it’s a lot of text. I finally told her I’d see if I could edit the file so we could skip straight to the story.
That was interesting. Here’s what a bit of the file looks like:
,A FEW M9UTES LAT]
,GOLDILOCKS >RIV$ AT
! BE>S' H\SE4 ,%E
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And my daughter loved it. And we couldn’t get her off the Orbit for the longest time.
The Big Boy Update: My son had spent a good bit of time playing Fortnite today. My husband told him he had to take a break. My son was incensed, complaining very loudly, “but I took a break when I ate lunch!”
The Tiny Girl Chronicles: Here’s my daughter on her Orbit. You can hear the braille cells changing as she presses the next line button:
Friday, July 6, 2018
An Act of Kindness
I typed my blog post on my iPhone in the dark in the back of our car while we sat in unmoving traffic last night. We went to see Imagine Dragons in concert and got an outstanding parking space. I don’t want to have a blind child. I don’t know if she wants to be sighted at this point because all she can remember is the vision she has, but I’d trade just about anything for her to have her sight back.
But that’s an academic discussion and sort of a downer. Let’s talk about the Imagine Dragons concert, starting with our crazy good parking spot and ending on the long wait in that same parking lot for the attendees to depart, one car at a time.
We used our handicapped placard for parking, which I always feel strange doing, but my daughter definitely qualifies for the privilege. We arrived earlyish and got a spot within fifty yards of the concert entrance. We had passed thousands of people in line just to get into the still closed gates. Our parking spot was ideal, but did we have to go to the back of the line to get in?
Apparently not because when they opened the gates we walked through a handicapped entrance area and were able to get ideal seats on the lawn. We spread out our blankets and told the other two families we’d hold the spots for them until they arrived.
My children were hungry and so were we. Once we had our seats (directly in front of the stage) secured we took turns getting food. My husband took my son first. Once they returned, my daughter and I went, very slowly, through the now-packed lawn area, avoiding people while she tried to use her cane, until we got to the paved walkway.
We got to the food counter, ordered chicken tenders, fries and a pretzel for my daughter. I didn’t want to order more because I had to hold her hand and the food and navigate us back through crowds of people. I asked if they took Apple Pay when the server was handing me the food and a man on the side said, “you don’t need that. It’s taken care of.”
I looked around, wondering if it was a, “pay it forward” kind of thing and told him, “please tell whomever I need to thank, thank you from us. That’s very kind.” It turned out he was the one who had given us the food for free. And he wasn’t done yet. He asked if we needed any drinks. I said I was getting only what I could carry back. That wasn’t a problem, he would have someone help me back to our seats. He wanted to know if we wanted several other things and was most insistent so we accepted a funnel cake.
He brought another staff member over and had him take down the names of my daughter (and my son when he heard she had a brother at the concert as well) because we had told him it was her first concert. I’m holding our food while he told me to come over to the funnel cake stand and I held that on top of our food.
Then he took us over to the merchandise stand and asked my daughter to pick out a t-shirt. He said, “I have a little pull here after all these years.” He and I talked about the venue’s history as I’d been going there since he started working. As he walked us back to our seats he said he was struck by my daughter and me weaving our way through the crowd and being patient as we waited to order our food. He has a close friend who’s seventeen-year-old son has lost his vision.
We thanked him and I told him he made our night very special. He said, “I’m not done, I’ll be back.” And sure enough he was. He had two certificates stating my children were attending their first concert. And he had the t-shirts. I gave him a big hug and said he had touched my heart with his kindness.
After the concert (which we loved) we discovered our very close parking spot put us about last to get out. So I wrote a short blog post in the car and put off this story of kindness until tonight.
The Big Boy Update: For some reason after seeing the lead singer of Imagine Dragons sing with his shirt off the entire concert, my son has been going around shirtless. He says it’s because he’s hot…but I wonder.
The Tiny Girl Chronicles: My daughter has a fever. Suddenly today she’s sick. She feels bad but has nothing other than a fever in symptoms. We’ll check her out tomorrow and see if we need to take her into the doctor.
But that’s an academic discussion and sort of a downer. Let’s talk about the Imagine Dragons concert, starting with our crazy good parking spot and ending on the long wait in that same parking lot for the attendees to depart, one car at a time.
We used our handicapped placard for parking, which I always feel strange doing, but my daughter definitely qualifies for the privilege. We arrived earlyish and got a spot within fifty yards of the concert entrance. We had passed thousands of people in line just to get into the still closed gates. Our parking spot was ideal, but did we have to go to the back of the line to get in?
Apparently not because when they opened the gates we walked through a handicapped entrance area and were able to get ideal seats on the lawn. We spread out our blankets and told the other two families we’d hold the spots for them until they arrived.
My children were hungry and so were we. Once we had our seats (directly in front of the stage) secured we took turns getting food. My husband took my son first. Once they returned, my daughter and I went, very slowly, through the now-packed lawn area, avoiding people while she tried to use her cane, until we got to the paved walkway.
We got to the food counter, ordered chicken tenders, fries and a pretzel for my daughter. I didn’t want to order more because I had to hold her hand and the food and navigate us back through crowds of people. I asked if they took Apple Pay when the server was handing me the food and a man on the side said, “you don’t need that. It’s taken care of.”
I looked around, wondering if it was a, “pay it forward” kind of thing and told him, “please tell whomever I need to thank, thank you from us. That’s very kind.” It turned out he was the one who had given us the food for free. And he wasn’t done yet. He asked if we needed any drinks. I said I was getting only what I could carry back. That wasn’t a problem, he would have someone help me back to our seats. He wanted to know if we wanted several other things and was most insistent so we accepted a funnel cake.
He brought another staff member over and had him take down the names of my daughter (and my son when he heard she had a brother at the concert as well) because we had told him it was her first concert. I’m holding our food while he told me to come over to the funnel cake stand and I held that on top of our food.
Then he took us over to the merchandise stand and asked my daughter to pick out a t-shirt. He said, “I have a little pull here after all these years.” He and I talked about the venue’s history as I’d been going there since he started working. As he walked us back to our seats he said he was struck by my daughter and me weaving our way through the crowd and being patient as we waited to order our food. He has a close friend who’s seventeen-year-old son has lost his vision.
We thanked him and I told him he made our night very special. He said, “I’m not done, I’ll be back.” And sure enough he was. He had two certificates stating my children were attending their first concert. And he had the t-shirts. I gave him a big hug and said he had touched my heart with his kindness.
After the concert (which we loved) we discovered our very close parking spot put us about last to get out. So I wrote a short blog post in the car and put off this story of kindness until tonight.
The Big Boy Update: For some reason after seeing the lead singer of Imagine Dragons sing with his shirt off the entire concert, my son has been going around shirtless. He says it’s because he’s hot…but I wonder.
The Tiny Girl Chronicles: My daughter has a fever. Suddenly today she’s sick. She feels bad but has nothing other than a fever in symptoms. We’ll check her out tomorrow and see if we need to take her into the doctor.
Thursday, July 5, 2018
Wardrobe Changes: 0
We went with friends to see Imagine Dragons in concert tonight. It was hot but the concert was good. It was my childten’s first concert. My daughter fell asleep part-way through and my son got interested in the boy in front of us who was playing on a phone.
I’ve been to a lot of concerts. The bigger they are, the larger the production, the more wardrobe changes there sometimes are. But not always. Tonight’s concert required only one pair of black shorts for the lead singer, Dan Reynolds. Simplicity.
We’re stuck in traffic and I’m too tired to write more, on my phone, in the car. An interesting thing happened though at the concert ooo have to write about tomorrow.
The Big Boy Update: Uncle Bob messaged me this morning, “I just heard from downstairs, “Reese, you’re hurting my feelings. You’re hurting my feelings, now shut up.”
The Tiny Girl Chronicles: my daughter couldn’t see the musicians or the stage really but she liked the music.
I’ve been to a lot of concerts. The bigger they are, the larger the production, the more wardrobe changes there sometimes are. But not always. Tonight’s concert required only one pair of black shorts for the lead singer, Dan Reynolds. Simplicity.
We’re stuck in traffic and I’m too tired to write more, on my phone, in the car. An interesting thing happened though at the concert ooo have to write about tomorrow.
The Big Boy Update: Uncle Bob messaged me this morning, “I just heard from downstairs, “Reese, you’re hurting my feelings. You’re hurting my feelings, now shut up.”
The Tiny Girl Chronicles: my daughter couldn’t see the musicians or the stage really but she liked the music.
Wednesday, July 4, 2018
Boom Woofers
Okay, I just had to go with that blog post title because it made me laugh today. We were visiting my in-laws for the Fourth of July and my husband was talking to his mother. The conversation was about some wiring he was going to do in their bonus room before it was painted to prepare for television and sound.
My mother-in-law wanted to make sure some wire or another was long enough or in the best spot in case they needed to get, “one of those boom woofers”. My husband looked at her and said, “do you mean sub-woofer?” She did, and knows what it’s called, it just wasn’t coming to mind at the time. We all had a good laugh at the alternate name.
For the Forth of July we went out on my in-law’s pontoon boat for a lake ride. We’d just gotten to the middle of the lake when we had a guacamole incident. It turns out it had been left at the house, which wouldn’t do. My husband and children were already in the water with the children in life vests, floating along happily. My in-laws live on the lake so my husband told us to go back, get the guacamole, and he’d wait in the water with the children.
Several minutes of discussion was had about the advisability of leaving him with two children in the middle of the lake. He pointed out that they were highly buoyant children and besides, they had noodles and an inner tube to boot. So we left them.
Electric pontoon boats don’t go that fast so we made non-record time back to the house, docked for less than two minutes and then returned to find them still floating, alive and no where close to being ready to get out of the water yet.
The Big Boy Update: My son came found some perfume bottles on display at Nana and Papa’s house. He’d never seen perfume before I don’t think, so I told him what it was. He was about to spray some on himself but decided against it when I asked if he wanted to smell like that all day. Then he brought the bottle over and was going to spray me but I told him I didn’t prefer perfume. He didn’t spray any on me but said if I did wear some, “maybe when you fart it wouldn’t smell as bad.” (Why I tell you all about these things, I will never know,)
The Tiny Girl Chronicles: My mother-in-law was getting the salad ready and asked Papa if he wanted some blue cheese with it. He said he didn’t think so. My daughter, who was sitting and listening to the conversation asked him a follow-up question, “do you want some red cheese then?”
My mother-in-law wanted to make sure some wire or another was long enough or in the best spot in case they needed to get, “one of those boom woofers”. My husband looked at her and said, “do you mean sub-woofer?” She did, and knows what it’s called, it just wasn’t coming to mind at the time. We all had a good laugh at the alternate name.
For the Forth of July we went out on my in-law’s pontoon boat for a lake ride. We’d just gotten to the middle of the lake when we had a guacamole incident. It turns out it had been left at the house, which wouldn’t do. My husband and children were already in the water with the children in life vests, floating along happily. My in-laws live on the lake so my husband told us to go back, get the guacamole, and he’d wait in the water with the children.
Several minutes of discussion was had about the advisability of leaving him with two children in the middle of the lake. He pointed out that they were highly buoyant children and besides, they had noodles and an inner tube to boot. So we left them.
Electric pontoon boats don’t go that fast so we made non-record time back to the house, docked for less than two minutes and then returned to find them still floating, alive and no where close to being ready to get out of the water yet.
The Big Boy Update: My son came found some perfume bottles on display at Nana and Papa’s house. He’d never seen perfume before I don’t think, so I told him what it was. He was about to spray some on himself but decided against it when I asked if he wanted to smell like that all day. Then he brought the bottle over and was going to spray me but I told him I didn’t prefer perfume. He didn’t spray any on me but said if I did wear some, “maybe when you fart it wouldn’t smell as bad.” (Why I tell you all about these things, I will never know,)
The Tiny Girl Chronicles: My mother-in-law was getting the salad ready and asked Papa if he wanted some blue cheese with it. He said he didn’t think so. My daughter, who was sitting and listening to the conversation asked him a follow-up question, “do you want some red cheese then?”
Tuesday, July 3, 2018
Precious Few
There are precious few advantages to having a blind child, or, I suppose to being blind. But there are some. One of them is the handicapped placard for large crowd events. It turns long, slow lines of traffic to get to a parking spot a long walk away from the venue into what I’d call a LIFO situation.
As a programmer (which I used to be before I became a mother and then a real estate agent), LIFO means Last In First Out. It’s used in inventory valuation in businesses and is something you learn early on in programming. Basically the last one in is the first one out.
In our case this evening, we were going to a festival where there were food trucks, rides and then fireworks. We didn’t want to make an afternoon of it so we arrived quite late. Without the handicapped parking placard, we would have been in a lengthy line of cars, parking at the very back of the now full parking fields. Instead, we were diverted to a parking area right beside the event space itself. We got out and were in line to get food in less than five minutes and then waited to see the fireworks in our chairs we’d placed in front of our car.
Once the fireworks were over (and I’d gotten my funnel cake after a forty-five minute wait in line) we got in our car to leave. Because the parking space we were in was right near the exit, we were back on the road in just a few minutes. Last to arrive, first to leave.
We told my daughter thanks for letting us used her handicapped placard tonight. She said she didn’t care. Which worried me, because that belies something underneath that means she did, in fact, care. I’m going to see if I can get her to talk about it, although I’m guessing she won’t want to.
The Big Boy Update: My son was very happy to be a the “Third of July” festival tonight. He wanted dumplings and then didn’t stop dancing around for the next half-hour while we waited in line for ice cream. He got both sorbet and ice cream and then swirled them together. It looked unappetizing to me, but he liked it. The dumplings, he said, were his favorite. He’s really starting to branch out and like all kinds of food.
The Tiny Girl Chronicles: My daughter did not like the fireworks. To be more specific, the sound of the fireworks. We were quite close and they were loud. She wanted to get into the car to get away from the noise. I was sort of on her side with this because I didn’t like the noise level either. I was hoping she’d be able to see the fireworks though as they’re bright on the night sky. I got in the car with her and realized she was able to see the fireworks through the windshield of the Model X. The car’s windshield goes back and overhead much farther than a typical car. Even through the tinted section of the windshield she said she was able to see the bursting lights in the sky. Although to her, I’m not sure it’s more than directional light. She asked me, “mom, can you hear them when they launch?” She was paying attention to the sound when the firework ignited and then the timing them before they exploded.
As a programmer (which I used to be before I became a mother and then a real estate agent), LIFO means Last In First Out. It’s used in inventory valuation in businesses and is something you learn early on in programming. Basically the last one in is the first one out.
In our case this evening, we were going to a festival where there were food trucks, rides and then fireworks. We didn’t want to make an afternoon of it so we arrived quite late. Without the handicapped parking placard, we would have been in a lengthy line of cars, parking at the very back of the now full parking fields. Instead, we were diverted to a parking area right beside the event space itself. We got out and were in line to get food in less than five minutes and then waited to see the fireworks in our chairs we’d placed in front of our car.
Once the fireworks were over (and I’d gotten my funnel cake after a forty-five minute wait in line) we got in our car to leave. Because the parking space we were in was right near the exit, we were back on the road in just a few minutes. Last to arrive, first to leave.
We told my daughter thanks for letting us used her handicapped placard tonight. She said she didn’t care. Which worried me, because that belies something underneath that means she did, in fact, care. I’m going to see if I can get her to talk about it, although I’m guessing she won’t want to.
The Big Boy Update: My son was very happy to be a the “Third of July” festival tonight. He wanted dumplings and then didn’t stop dancing around for the next half-hour while we waited in line for ice cream. He got both sorbet and ice cream and then swirled them together. It looked unappetizing to me, but he liked it. The dumplings, he said, were his favorite. He’s really starting to branch out and like all kinds of food.
The Tiny Girl Chronicles: My daughter did not like the fireworks. To be more specific, the sound of the fireworks. We were quite close and they were loud. She wanted to get into the car to get away from the noise. I was sort of on her side with this because I didn’t like the noise level either. I was hoping she’d be able to see the fireworks though as they’re bright on the night sky. I got in the car with her and realized she was able to see the fireworks through the windshield of the Model X. The car’s windshield goes back and overhead much farther than a typical car. Even through the tinted section of the windshield she said she was able to see the bursting lights in the sky. Although to her, I’m not sure it’s more than directional light. She asked me, “mom, can you hear them when they launch?” She was paying attention to the sound when the firework ignited and then the timing them before they exploded.
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