Braillist Assistant

I got to be the assistant to my daughter's braillist this week.  She prepares materials for my daughter and I print them out, but some materials just can't be printed.   In this case, it was all about graphs.   There was a collection of videos my daughter would be listening to that would talk about the different graph types and while conceptually she could understand the information, she needed something to understand what the videos were describing—that the other students were able to see.

Here's what I created for my daughter.   She referred to them throughout the videos to reference the different parts of and types of graphs the videos were describing.   She seemed to get it fairly easily.  My daughter wasn't overly impressed with my work but her braillist said I did a good job, which made me feel good since she always does such a thorough job for my daughter.







The Big Boy Update:  My son really needs to interact with some children other than his sister.   He's getting in trouble because the way he wants to play with her is not at all how she wants to be played with.   I talked to him about going on some bike rides or other outdoor activities with the children closest to us.   Hopefully, he will get out with friends more this coming week.

The Tiny Girl Chronicles:  This morning my daughter came in and woke me up, saying, "Mom, I'm proud of myself."   I asked her why and she told me she had heard Kevo make a noise and realized he was stuck.  (Kevo is our Roomba.)  She remembered she had dropped a hair tie on the floor so she went to Kevo, turned him over, pulled out the stuck hair tie, flipped him back over and pressed his butten.   "Then he started up again and he was fixed!"   I was proud of her, too, I said.

The Chef and The Crab

This afternoon my husband talked the children into watching The Little Mermaid.  In some households, you wouldn't find that to be a problem—getting the children to agree to watch a movie.   Here, we have a two-fold problem.  

My son is the first obstacle: he doesn't want to watch a movie unless he's seen it already.   And sometimes, he doesn't want to watch the movie even if he has seen it.   Maybe he's a little like me in that he doesn't want to commit to a long period in front of the television.   It's hard sometimes to even get him to the theater to see a movie he wants to see.

What we have to do typically is put the movie on and as long as he's in the room for thirty seconds, he's hooked.   The one exception to this rule is movies in a series, like Harry Potter or Star Wars.   In those cases, he wants to watch them all in a row, preferably in one sitting if we'd let him stay up until morning in the case of Star Wars.

My daughter doesn't want to watch movies because she can't see them.   Movies don't describe things in the same way that a book does.  There is descriptive audio on many movies and we try to suggest and try to find movies that provide it.  

Saturday's sunny late afternoon rays must have shone on my husband and given him powers of movie persuasion though because both children came to the living room to watch.   They watched until dinner was ready and then finished the movie afterward.

And then, because there is a second movie, they started that one with my son's hearty enthusiasm.  After a bit, we all headed outside to jump on the trampoline before darkness set in.   I came in after talking to the neighbor about unexpected emergency surgery their dog had to have after inhaling a four-inch bone (she is a Daschaund).   My son came in shortly thereafter and started the movie again while his sister and father continued to jump.

I was working on the computer when I heard uproarious laughter coming from my son in the living room.   He ran in and told me excitedly, "it's the entire point of the movies, the chef and the crab!"   If you haven't seen the movies, the crab, Sebastian, has altercations with the palace chef throughout the movie.   The chef trying to make dinner out the crab is my son's favorite part of the movie, he told me.

We've been trying to get them to see The Little Mermaid for a long time.   I wonder if their play for the rest of the weekend will be mermaid-related?

The Big Boy Update:   My son just ran in the room here, where I'm typing this on my bed.   He grabbed some pajamas and told me more about the chef and the crab going as far as saying, "I mean it should be a meme.   That's how important it is."

The Tiny Girl Chronicles: My daughter might not have liked the movies as much as she did today were it not for the office chair she's recently made her newest obsession.   She spins in it all the time.   It's annoying to all the adults, including her teachers she meets with online.   I went through a spinning on chairs and piano stools during piano lessons phase myself, so I can understand in a long ago and far away way.   She brought the chair downstairs tonight and rolled around inbetween bouts of spinning while listening to the movies.

TGIF

At this point, I'm getting excited that there are only two weeks left until school is out for summer.   I approach the end of school with a fair amount of trepidation largely because I don't know how I'm going to keep my blind child entertained and/or occupied through the long days of isolating summer.   Perhaps we'll be more together soon, but the amount of hesitation from everyone coupled with us wanting to stay safe for the sake of my in-laws and I'm not sure how much longer this is going to go on.

The thought of sleeping in and letting the children get their own breakfast multiple days running sounds like a nice respite from school, but the lack of activities is going to come in to play fairly early on into summer.  

For my daughter, it will be sooner than my son—if we were to let him have his fondest wish and spend all day on screens, going from watching videos to playing video games and back.   It's been raining for I think over a week now, which the dog dislikes because we won't let her stay out and get muddy—something she would happily do.

We've been planning activities and school over summer work and have asked the teachers for some assignments, but I think we're going to have to wait until the second week of summer to really see the impacts from school being out.   Maybe I should buy stock in Audible...

The Big Boy Update:  My son put together two Tinker Crates from KiwiCo today.   He made a walking robot and an automaton.   They really are neat little cardboard boxes with activities in them each month.   My son wasn't into them at first, but now he looks forward to each month's mailing.

The Tiny Girl Chronicles:  My daughter is currently squealing outside in the rain.   She loves the warm rain of spring and has had her rainboots and raincoat on standby every day.   Her gear is pretty useless though because she comes in drenched every time.

One-Handed

My daughter has a standing meeting outside with her friend, Keira, after school at 4:00 each day.   They do social distancing things and both are very conscientious about adhering to distancing guidelines.   Today, when I went outside to find them, she was on her bicycle, as was Keira.   They were pedaling around while Rayan was in the neighbor's driveway yelling something when they came around to him each time.   I didn't catch the game's intent before going back in.

There were balls all over the yard.   My daughter wants to play fetch with the dog and is making progress towards that goal.   The dog will play fetch with me, but only because I won't take the ball until she's dropped it.  My daughter and son want to try to get the ball from her, which she thinks is a game.   My daughter is now waiting for her to drop the ball, only there's a little problem in that the dog doesn't get right at her hands when she drops the ball and my daughter doesn't know where it is.   When she's searching for the ball the dog grabs it back, thinking its part of the game.

If I'm standing by my daughter, the game works very well, but we're trying to get the dog to understand the new rules.   I love our dog very much and wouldn't want her any other way, so when I tell you this, know that it's not a mean thing, it's just the truth.   The dog is not very smart.   Loveable and wonderful, yes, but slow to learn things.   She also doesn't pick up on cues well and doesn't realize things until many repetitions have happened.

She doesn't get the need to drop the ball right at my daughter's feet, and that's going to take some time.   The other thing the dog does is get distracted by the smells in the yard next door where we throw the ball.   It's the only direction we can throw the ball for any distance.   Often, after a few runs, she smells something, drops the ball and the game is over.   My daughter can't know when that's happened.    She loves playing with her though so it doesn't bother much.

But back to bike riding.   Later, I came out and my daughter was alone.   She asked me if I knew how to ride my bike without holding onto the handlebars?  I shuddered internally but said yes.   She said Keira and Rayan could and she was working on it.   Not one minute later she'd fallen over.   I told her to take it slowly until she had built up her skill.   She's working on one-handed to start, she said.

Note to self: make sure she's wearing her watch each and every day.   At some point, that watch is going to pay for itself in worry saved.

The Big Boy Update:  We had a blowout last night about screen time with my son.   It wasn't that he was having some, it was that when it was time to stop, he became enraged at first his father and then me.   It was a long and sordid tale of a conversation in which he was furious to no end with us, tried to change the argument to his advantage twenty times at least by redirection, and then just wanted to go to bed—something he was fighting at the outset of the discussion.   In the end, we told him we weren't taking away screens for today, what we wanted was for him to decide how he wanted the time managed.  Did he want us to set a timer?  Because he was unhappy when we told him time was up, yelling and saying we didn't warn him (trust me, a warning wouldn't have changed things.). Alternately, did he want to manage his own time?   He had until this morning to decide and he went with managing his own time.  Tonight we reminded him to figure out how he was going to know when to stop because he wasn't getting one minute over and we'd hate for him to lose his progress.  And he did it.   We're going to try this method going forward to see if it will keep working.

The Tiny Girl Chronicles:  It was release day for the snails, slug, and earthworms.   My daughter liked having them, but not so much taking care of them.   This is a little unlike her, but in this case, I think it was hard to know what to do for them without overdoing it so she just kept the terrarium watered.   She wanted to get more immediately, but I told her we needed to give the terrarium a week's rest.   We'll see if she remembers them in a week or if she's moved on.

COVID-19 Reunion

My in-laws decided to come home from wintering over in Florida, arriving in town late last night.  They typically come home at the beginning of May but stayed later this year because of the pandemic.   They wanted to come home and also wanted to see us.   We, of course, all wanted to see them, but we also want to keep them safe.

Today, after school was out, came over wearing masks to see us and deliver those things Grandparents are always aloud to bring: presents.  They had things for each of us as well as items they'd been keeping from the two Disney trips my husband made, one with each child, that was too large to fly home with.

In the typical fashion of my Mother-in-law, my son had a drink cup from Disney that had some beverage in it.  She had kept both the cup and the drink and had brought both home in a cooler for him.  She brought things for my daughter from Disney and then some fireworks for both of them they had picked up on the way home.

My son got a cap gun that we told him had to be used outside lest he frighten the dog and my daughter got those little pops things you throw on the ground that make a snapping sound.  She brought me a poncho she hand-made and my husband lots of overages for the pantry as well as some beef jerky they know he likes.

They also brought me some ornaments I made for their large house plants I made in 2008 that she put up during Christmas.   They haven't been in Florida for Christmas in a long time so she brought them home for me to show the children.   We'll keep a few for their tree and they'll put the balance on theirs for the holidays.

My daughter went through two boxes of snaps on the porch and my son showed them all about the video game he's playing.  I got to show them the embosser we've had during the time we've been at home that prints braille.  This is the machine that has given my daughter's teachers the ability to send us materials that we can then print so my daughter can feel and read them.   I got to show them the translation software that's equally important in the process of getting printed braille to my daughter.  They were as excited about it as I've been.   It's cool stuff.

They headed out before we had dinner because they had a lot unpacking to do.  We're looking forward to safely seeing them more in the coming weeks.   We've decided to continue our isolation to the level we've been doing up until now so that we can try and do our best to keep them safe.

The Big Boy Update:  We had a hard drive crash on the RAID 10 network server my husband has for our files.   There are four hard drives that have a single set of data spread across them in such a way that a drive can fail with no loss of data.   You can remove a damaged drive, replace it with a new one, and ask the operating system to do a repair.   We had a dead drive though and my husband had an idea.   He and my son took the drive completely apart.   They looked at the platers and drive heads as well as all the housing and connectors.   My son really enjoyed it and asked a lot of questions.  The drive is in a bag for future educational opportunities and will likely live in the attic until we need it.

The Tiny Girl Chronicles:  My daughter was so excited about her grandparents coming to town today.   She called my mother and sang a song to her she made up while she was on the swing.   My mother sent me some of the words she sang:

I am so excited, I am so excited, I am so excited.
My Grandparents are home and they are coming to see me after school.
This will be a good day.
I'm so happy.
I can't wait to see them.
My Grandparents are coming.
Here I am.
Here I stand.
Here I wait to see my Grandparents.

Facial Expressions

My daughter can't see facial expressions.   She doesn't remember what faces look like and she'll never see a face again.  She knows we have expressions we show on our faces and naturally, she does some things.    She has a lovely smile when she's laughing or when she's happy about something.   She has some angry faces she makes naturally when she's upset and crying or angry.   But some things she just makes up.

She has a face she does when she's smiling about something you've said where she wants to convey "yes" without saying it.   It's an odd-looking smile with her lips pulled back in a flat sort of smile.  Once I figured out it was a good face, I just went with it.   In a way, I'm like a child trying to understand people's feelings and meanings by how they shape their faces.   She's got her own facial language and I'm figuring it out as she uses the various expressions and sounds with more regularity.

When she's angry about something she has a very similar thing she does with her mouth, only in this case it's turned down and her teeth are barred.   She's not happy at all when she flashes that expression.

She has a sound she does that is fine when she wants to express valid displeasure, only she was using it at inappropriate times, not unlike someone telling you, "go away!" when you tell them, "Here's your water bottle you asked me to bring you."  The sound is a very clear extended-length, "grrrrrrr."

She did this to me the other day when I'd done something to help her.  I told her it wasn't okay to use that sound like that.   She told me, "it was part of a song I was singing."   "A one sound song with no tune?  I don't think so,"  I told her.   So she tried again, asking her brother, "did that sound like a positive noise?"   He told her it did not.  

So she gave in in this case.   Not right then, but after she had pushed her father and me too far one day and had some significant consequences as a result.   She went to bed mad, but the next morning she came downstairs and apologized (her apologies are the best, coming from the heart and very sincere.)  She said, "I'll work on not saying, "grr" Mom, I'm sorry."

And she has been.   It still comes up, along with the other blind facial expressions she has.   She's communicating and that's important.   It's better for any of us to express how we feel with a facial expression over saying something like, "I hate you" or "you're an idiot."  She's doing a good job creating her own way to communicate.

The Big Boy Update:  My son and daughter were talking about the animals in her terrarium, which we are going to release today.   My daughter said her earthworm had had babies.   I said it had gotten torn in half accidentally, making two earthworms instead of one.   My son had a different idea, saying, "It fell in love with its butt.   Worms do that."

The Tiny Girl Chronicles:   My daughter is having the best time playing Monopoly with Mrs. B.   She even admitted she didn't want the game to end today when we were all three playing, Mrs. B. on the computer screen and me as the banker.  She had the only matched set of properties and had put only two houses on Boardwalk. At this rate, the game was never going to end.   At the very end of the hour, I suggested she buy more houses.   She now has a hotel on Park Place and Boardwalk.  I predict the game will end soon now and they can get on to playing other games.

What Gives?

My son has just had two very bad days.   I don't know if it's COVID-19 related isolation or something else, but he is fighting back so hard it's painful.  Painful to watch.  To experience for him and to be the parent for us.   He doesn't like some requirements we place on him, such as this time when he was required to sweep up the pretzel pieces he spilled on the floor—yesterday.   That started it.   It ended, finally, tonight at ten o'clock—hopefully.

Yesterday his backtalk and defiance caused him to lose screens for today until he wrote a full-page apology to his father.  He still had to sweep up the pretzels, it's not like he ever gets out of something just because he doesn't want to do it and throws a fit about it.   He never wins.   He tries so hard though.

He tries to rationalize the situation, claiming we're cruel or in this case, saying his father was a neat freak.  Then he called his father an idiot.   That's grounds for disciplinary action.   Today, all he had to do was write the apology letter he didn't want to write, and he'd get screens back on this holiday day off.   Only he didn't want to do it.

I heard things being thrown around upstairs and went to investigate.   His sister was outside on her bike so I found him in his room, of his own choosing, with all the kitchenette toys back in the room, pulled out from the closet storage.   He was dashing plastic food all over the place.   The beds were a mess with pillows and other things from them along the hall in what appeared to be a version of, "the floor is lava" and the pool noodles were laid about in various places.

I told him I liked what he did, but to be sure he cleaned it up before dinner.  His sister came in a bit later and I heard them quarreling shortly thereafter.  I heard her doing a common complaint, "GET OFF MY BED!"  She has the bottom bunk and hates him on it.   He didn't budge so apparently after multiple requests, she started kicking him to get him off.   So he bit her.

He bit her on her bottom hard enough to draw blood.   He will have a consequence for this but I haven't come up with it yet.   But still, there was trouble.   It got worse for both of them because she had kicked him, also not allowed, although I was sympathetic to her cause because I'd heard what had happened.

It got so bad that I told them they were moving out of their room effective immediately—both of them—because they couldn't get along and I was tired of it.  Eventually they decided to work together to clean up the room and hall and came up with a plan to have some semblance of harmony.   This was the only way I was going to let them stay in their room.   They were barely getting along at that point, but they didn't like the alternative.

As they were finishing up I noticed our neighbors that we're co-isolationing with (I made that term up) out in their back yard with their firepit lit.   They were toasting marshmallows.  I yelled to the children to hurry down.  I sent them next door with marshmallows, chocolate, and graham crackers (I had some on standby) and hoped the neighbors wouldn't mind.

We had about two hours of happy times at this point because it's hard to be unhappy when marshmallows are being toasted.   It was good catching up with them, even if it was well before dinner and we were having dessert first.

I thought it was over, but as soon as we got home, my son started up again, taking aggression and anger out on his sister at every turn.   She wasn't doing anything, she was trying to steer clear of him even but he was seeking her out and basically being a bully, blocking her scooter with her little Tesla car so she couldn't get around or away from him.

After dinner, he got worse and finally wrote the apology letter, but he was in such a high mental state that folding the laundry was deemed "slavery" and he got in even more trouble for insulting and then hurting his sister's feelings.

Finally, I got him in bed and was able to connect with him emotionally, sitting in bed beside him while we watched a LEGO puzzle box tutorial video and talking about creating it together later to see if we could stump dad.   I hope he'll be back to normal tomorrow.  This is awful for him.

The Big Boy Update:  My son asked me right before I left his room for the night, "Mom, what's the worst way you can kill a person?"  I said I didn't know, mostly because it was an alarming question to ask.   His next statement made me understand though when he said, "because I want to do whatever that is to COVID-19.  Is eradicate a bad way to kill something?"  I told him if he could eradicate COVID-19, he would be the hero of the entire world."

The Tiny Girl Chronicles:  My daughter wanted to help her brother tonight because I told her he was having a really hard time and would she be able to forgive him for biting her and maybe help by folding the cloths he had to do since he had to write the apology letter and still had to take his shower?   She folded all his cloths and was so happy coming downstairs to tell him.   He screamed at her and called her an idiot and didn't she know he wanted to fold the cloths because now he was going to have to fold the other clothes? (he was going to have to do that anyways with us, we told him.). He was so angry he then said, "I'm going to destroy the pile!"  She put the cloths down, turned and went to her room to cry.   She rarely does this, she's a tough little girl.   I went upstairs and she said, "Mom, I don't understand, why would he want to destroy the work I did?"  I told her he was so unhappy right now and we didn't understandy why and that it wasn't her.   She has been listening to Dear Evan Hansen a lot lately and her favorite song is, "Anybody Have a Map?"   I explained that the song was about two mothers who were trying to help their sons, who were both very unhappy.   That as parents, sometimes we feel a lot like that—we wish someone had a map to help us know the right things to say and do to help our children.   Even after all that went on today, she was willing to forgive him.   I think she understands what its like to be very unhappy and just wants to help.

One Under Par

Today was similar to a lot of weekend days we've had during the COVID-19 shelter at home time.   The children were running around, playing games, making a mess, and having fun, interspersed with eating breakfast, asking for lunch, finding their own snacks, and listening to the latest audiobook.

I was where I usually prefer to be: in the bedroom, lying in the bed on my side, watching things on my iPad—this being the most comfortable position for my back.  My husband, once up, usually goes to the basement and is either working on work things or playing Fortnite or other popular games with the online friends he has from around the world.

Around about lunchtime I got up, got dressed, and planned to go out to get a prescription, some new bone-type treats for the dog to engage her need to chew and some desserts for the freezer for the children.   I got them lunch and then told them my plans to head out, listing where I'd be going, and asking what particular items they wanted for dessert

I left the house and took the dog to the pet store near our house.  I worked on her fear by having her placed at the entrance to the store while I selected some items and then headed off to the store.   At this point I messaged my husband to tell him where I'd gone, since I hadn't told him before leaving the house.

Just before getting to the store a few miles away, he messaged me back, "I've finished up and am getting lunch."

Oh hell.  He was playing golf this morning.   It was on the calendar, but I hadn't checked because he, like the rest of us, hasn't been going anywhere recently.   I called both sitters next door and their mother, getting no answer from any of them.   The children were probably fine, and they can and do stay alone for a few minutes from time to time while we overlap in our trips places, but it had been forty-five minutes and no one had realized they were home alone.

I called my husband, telling him I was on the way back.   He wasn't particularly upset, he knew they'd be fine he said, but it would have been useful, we both agreed, to have one of our sitters over.   At this point, the phone rang and I took the call from Blake next door, only to find out he was already with my daughter outside, jumping on the trampoline with her.  

Relief.   Along with a feeling of stupidity.

I called my husband back and said we were covered.   He was so good about it.   He said he was going to the store since I was heading home and that he'd had a good round, shooting one-under-par.   I was under par myself for the day, only in this case in parenting decisions.

The Big Boy Tiny Girl Game Playing Update:  The children play very well together.  I think from a social maturity standpoint, being at home and playing with her brother a lot has helped her understand social dynamics of play somewhat.   Her brother is an excellent playmate.   He never acts like their games are less than interesting to him just because she can't see.   I'm not sure if he even realizes it, because it's always what he's done as far as he can remember.   He does, however, take advantage of her lack of sight sometimes.   Today while she was preparing for a game, he was on his iPad, playing and letting her get everything organized until she told him she needed him and counted downtime before he had to come up.   He can work the system with her, but since she doesn't seem to realize it, we don't say anything.   She's happily getting things done in preparation for a game while he's being unhelpful.  It's helping her be self-sufficient in a way, something that's an important skill for her.

The Top Ten Days

I was talking to a friend about children the other day.   We both had children, each with them at different ages.   Somehow we started. talking about "the most" days as parents.   And by "the most" what I mean is the most fun, the most life-changing, the most happy, even the most sad.   If you could pick out ten days each of your children that were the most important (by any of those categories) could you easily do it?

It's easy to say the day they're born, the first day your child walks or says your name, maybe the first day of school or first birthday.  When they got Chicken Pox, Christmas where they went nuts over the presents when they came downstairs.   These are ideas, but honestly, I'm just throwing those days out because they seem like they should be big days in the life of a child.   I don't think the day either of my children walked was overly amazing.   They barely took a step.   The next day they took two steps and then they were off and running a short while later.

The question we wanted to know the answer to was what do you think are the ten most impactful days in the life of your child?  What we came up with was we couldn't say for certain—because we just didn't remember all the days.   I'm certain some of my daughter's days would be vision-related.   But which ones?  

I think I could do it in the case of my daughter.   I could do it because starting at the age of one month I've written something about her every day.   It's a theoretical way this long and windy blog could someday be of use to me.   For now though, it's nice to know I could go back through it all.

The Big Boy Tiny Girl Facetime Swing Swapping Teamwork:  The four people and one dog in our family were all outside with Aunt A on Facetime having an afternoon chat today.   The children wanted to change out the swings and Aunt A watched them climb on the top of the A-frames and start to drop various swings down from the hooks.   My daughter said, "I'm almost as high as a bee would fly."  At one point I told the children we needed to consult with Aunt A on strategy because the swing they were trying to unhook was very heavy.   Strategies were discussed, complaints along the lines of, "I want to do it first" coupled with, "I didn't get a turn" were.  Finally, my husband came in and took the swing down easily.   My son walked off, not in the least upset, saying, "I was helping with encouragement."

Sad but Insightful or Maybe Hopeful

My daughter wrote a letter to send with her present to Mrs. Aagaard.   I read the first two lines but then my daughter said I could just put it in the box and I didn't read it.  I did exactly that and mailed the package.

Yesterday Mrs. Aagaard wanted to talk to me first, before talking to my daughter.   She has never done this before, including when she was my daughter's teacher.  She asked me if I'd read the letter.   I admitted I hadn't.   She said she thought it was important I hear it.

The letter itself was full of happy words and I miss you's and want to see you soon's, but after that, she got into a prose poetry mode.    It may read a little funny because there are misspellings and it seems like a period is missing here and there.  Overall,  I think you can get a feel for it

 How it feels to be blindI feel my forehead sweating  but I half to looking at all these wonderful years I have been hear, In the mitts of the world no one understand how I feel, But I Love To Be how I Was Made To Be and I can Have Hope I Have To Be How I Was Ment To Be And I have To be How I Want To Be and I’m and no one understands me.

This is powerful stuff.   Maybe she's not doing as well as we thought she was.

The Big Boy Update: My son is raising dinosaurs.   He's playing a Jurassic World game.   It's fun to watch him play.   He moves from overland view where he makes decisions on how to develop and build his park.   Then he drops into a Jeep and drives off to innoculate a dinosaur that got an infection.   He's a good driver in the game, cutting corners and edges tight and yet not hitting them.   He's like his father that way.

The Tiny Girl Chronicles:  We still have snails and worms but they let the frog go.   I haven't seen a single creature, but apparently, they're there.  My daughter has a rock she wants to put on the cage so they don't escape (they couldn't escape).   We're using her favorite rock named, 'Cloud' because it is shaped like a cloud looks.

Kindergarten Catch Up

I've mentioned many times how we keep in touch with my daughter's braillest from Kindergarten.   She is what I would call, "a dear friend," because she is very special to my daughter and to me.   My son and husband are big fans of Mrs. Aagaard too, but it is my daughter and I that have the closest relationship.

There are certain people who are good at keeping in touch.   My mother is one of these people.   She has people she's regularly contacted for years, even though the time they knew each other was many years ago.   It is through contact, of any kind, that relationships are built upon and strengthened.  

My daughter made a window ornament for Mrs. Aagaard and yesterday it arrived in the mail.  Today the two of them were going to talk.   Only it didn't happen because Mrs. Aagaard and I got to talking about so many things, catching up on each other's lives, school VI stories among other things and we ran into my daughter's daily bike ride with Keira.

Tomorrow we're going to try again to get them together.   My daughter really enjoys talking to people.   She needs contact with friends, even if it's only over the phone.   I had a lovely time catching up today as well.

The Big Boy Update:  My son got mad today because my daughter, Mrs. B. and I were working on a school project and we were too loud for my son.   He came upstairs and asked me if I had any duct tape.   I asked him what for, and he told me it was so he could tape the door shut we kept opening so he could work!

The Tiny Girl Chronicles:  My daughter was angry yesterday and ended one of her calls early.   She said she didn't want to have any more calls.   She was mad all the way through bedtime but then was disappointed to find out she didn't have her regularly scheduled call this morning.   She was hurt and mad, I told her, but she still had to write an apology letter for the things she said.   She typed it up on the keyboard quickly, I emailed it off and then she was back to normal, as though nothing had happened.

Something Bigger At Play

My daughter got mad at her braillest today for what, I think, should be small things.  One was that she didn't know in advance that her anniversary was coming up so she could make her something.  That, and she couldn't get her mic to unmute on the Google Meet call to wish her Happy Anniversary along with her fellow VI students.

She's very easily upset by things and I am busily imparting consequences.   It seems clear she wants to control things in her life because she's feeling out of control.  Maybe I need to turn things around and instead of taking things away, give her more control.   I can do that, but I can't let her be outright rude to teachers, family, and friends in the process.

I'm going to have a think on this and report back with what we do and how it goes over.  There's something bigger at play here that's affecting her.   She's hurting somehow and needs love in addition to discipline right now.  Maybe I need to focus more on the love and less on the discipline and see how it goes.

The Big Boy Update:  My so ran upstairs this morning and shyly handed me two folded pieces of paper and said, "you're not the only one who does origami in the family, mom."  He did a very accurate job of the origami models.  I was proud of him.

The Tiny Girl Chronicles:  I got upset today over some videos my daughter was suppose to watch for school.  I just couldn't figure out how to play them.  The amount of connectivity, links, sites you have to authenticate to first before the links will work, videos she has to listen to, emails with instructions that get lost in the stack of my inbox and assignments coming from six different teachers (class teacher, VI teacher, braillest, Orientation and Mobility instructor, Adaptive PE teacher, and music therapist/piano teacher) is complicated to keep organized.   My daughter came over, hugged me and gave me the softest of kisses and told me it wasn't my fault, it was hers.   It was definitely not her fault, I told her, it was my responsibility as her mother to make sure I got it all working and to her on time.   I m going to try and do for her what she did for me today, it definitely made me feel better.

Tigger

It has been challenging to find consequences my daughter takes seriously.   With my son, losing screen time is about the worst thing that can happen to him and just the threat is enough to get his attention when we have a behavioral issue to address.

Until recently, my daughter had very little that would truly give her pause and cause her to think about her actions and words.   Of late, she's been very interested, no obsessed, with audiobooks.  Losing the ability to listen during her free time to the latest (or any) audiobook has been enough of a punishment that she is willing to make a change for the positive.

Today, I had to come up with something else.   She's starting to move into formalized piano lessons.  This is problematic (to her) because her teacher has been her music therapist for four years.   Music therapy is more a therapy session than a music class and while they do a lot of music, including writing songs and playing the piano, the sessions were largely directed by her.

Therapy needs to focus on what the child is feeling and while her teacher/therapist is providing guidance in the session, if my daughter needs to get out some anger through loud, crashing, stomping music, that's the best thing for her at that time.  She has been playing the piano and learning music theory and the basics of the piano organically,

The trick with teaching a blind child piano in a meaningful way beyond theory, is you need to be able to teach braille music.   Braille music uses the same six dot system that regular braille does, but the dots mean entirely different things.  Chelsea, our music therapist, and I have invested in an introduction to braille music course.   If you haven't been introduced to braille music, this is no simple task for the teachers—and Chelsea and I have zero experience.   Chelsea has been heads down in the print versions of the books, learning braille music so she can teach my daughter.

Chelsea is impressive, picking up braille music very quickly, even though she doesn't read braille.   She and I have been doing a tag-team approach having her keep the print booklets while I have the braille printed versions here at the house.   We get on Zoom calls with my daughter and she introduces the concepts to my daughter.

This would have gone well if my daughter had been both interested and open-minded about learning braille music.   She was and is not.   Music therapy, which was fun for her because she got to do what she wanted and Chelsea helped her work through emotional and mental strain through the sessions, is now actual lessons.   My daughter rejected braille music outright the first time because she was unwilling to let go of her understanding of the dot combinations as letters and contractions and see them as having a second meaning.

Chelsea has taken the braille music course we purchased, which is not specific for piano and is also not directed at young children, and created special lessons just for my daughter.   She even wrote up some sheets of songs my daughter has been singing and wanted to learn on the piano.   It didn't matter though, my daughter still rejected it almost completely.   Chelsea is making progress, but the format change from therapy session to lesson format with concepts my daughter is not wanting to contemplate has made things slow going.

Today, my daughter was outright insulting Chelsa and me, saying we were stupid (which is definitely not allowed,) was throwing papers all around, banging on the keyboard, and even kicking it.   She threw a pillow at one point which closed the laptop and ended the Zoom call.   I pulled her into the next room and had a rough conversation with her.

During our talk, my daughter told me she didn't care about the keyboard (which I've had since the 1990s) telling me, "it not an heirloom."   She was furious, resentful, and absolutely, positively not going to do get back on the call.   I suddenly realized I had a leverage point.   I told her I was taking Tigger until further notice.

Tigger is her favorite stuffed animal and sleeps with her every night.   She was in near hysterics.   She cried out, "you'll tear Tigger's head off!"  I said I had no intention of hurting Tigger, but if something happened it wouldn't matter to me because "I don't care about Tigger.  He's not an heirloom."   I had her, and she knew it.   I reiterated I wasn't going to hurt Tigger, but she wasn't getting him back for now and I expected her to go back into the room, get on the call, be respectful to Chelsea and at least try the music.   She only had to do so for a few minutes and then Chelsea had something fun planned.

It worked.   I'd found my leverage.   She had a relatively nice remainder of the lesson and even tried to match the braille music characters to the tune of the Moana song.  Chelsea and I texted for a long while after the call about our strategy going forward.   Mostly, it's going to be slow, until my daughter gets it.   At that point, we both predict we won't be able to get her music fast enough.

The Big Boy Update:  My son is interested in LEGOs again.  He has taken over our dining room table and is currently trying to put together every LEGO model we have instructions for.   We have a lot of instructions.   The table is packed with completed models.

The Tiny Girl Chronicles:  After giving in for the music lesson today, my daughter said, "I don't want anyone to look at me.  I just want a mask."  I told her I'd go get her a mask and she could wear it for as long as she liked.   She picked the dinosaur mask from the three I offered and then happily sat at the keyboard, eating a Sourpatch Kids gummy every so often when I thought she'd paid attention and listened.   It was bribery at its finest.

Advisory Panel

Recently I spoke with the president of Hadley, the company I've been taking my braille courses from for the past several years.   They're having a big upswing in people signing up for their courses and discussion groups.   COVID-19 is an isolating thing and for many visually impaired people, they are stuck at home and all alone.

I was invited to join the Advisory Panel to provide feedback on the upcoming offerings and website updates they're rolling out.  I was honored to be asked and I'm pleased to be able to give back to a company that has enabled me to communicate with my daughter via braille.

Her work at home, during COVID-19 has been made possible in large part by my ability to read and work with braille.   I'm not sure what being on the Advisory Panel will entail, but I'm very glad to be a part of the work they're doing at Hadley.

When something has touched your life in the way Hadley has done with mine, it's a good feeling to be a part of what they're doing.   Hadley has been around for one hundred years and has provided education for the visually impaired, family members and friends, free of charge since the beginning.   They have reached over 172,000 learners in fifty states and sixty--five countries in their one hundred years.

It is a privilege to be part of something so impactful to the blind community.   I'm looking forward to giving my time back to Hadley.

The Big Boy Update:  My son's teacher isn't much into video games.   I heard her ask this morning what my son had been doing and I heard him trying to explain what he'd been doing over the weekend in the games he's been playing.   She listened and commended kindly, even though I know screen time, especially spent on video games, is not her preferred way for children to spend their free time.   My husband and I met through video games and as such, I think video games will always be a part of our family.

The Tiny Girl Chronicles:  My daughter worked on a stained glass window (made with tactile stickers) to send to Mrs. Aagaard today.  I can't wait to see what she thinks of it when it arrives by mail.   Mrs. Aagaard has been sending my daughter things to put on her wall that are tactile while we've been at home during COVID-19.  We are so fortunate to have Mrs. Aagaard as a friend, even after she retired from being a teacher two years ago.

Yet Again, She Knew

My daughter has had a very bad attitude towards her father and me lately.   She has been rude and irreverent and has acted as though she deserved everything and expected us to give her things and serve her.   Not all the time, no, she's definitely a very sweet child.   But there has been a disappointingly large percentage of the time she's had unacceptable behavior lately.

I lost my temper quietly a few days ago.   I said sadly that I'd made a mistake in getting them the audiobook because obviously they weren't appreciative of it and were disrespectful to our neighbors.  It was with great sadness that I wouldn't be able to get them more audiobooks.   No, no, go ahead and enjoy this one.  I don't know that I can let you have any more, after today's behavior, children.  Words like that frightened them both.

My daughter found out the next day from her father that I wasn't absolutely not letting them have any more audiobooks, but that she had better step up her behavior and likely should apologize to your mother if you wanted to change things.   My daughter informed us she had already apologized loads (she hadn't apologized once and her attitude certainly hadn't changed.)

She and her brother listened to the last audiobook yesterday for hours and I thought they'd finish it, but they stopped with a few hours to go.   Today, my daughter came in the bedroom this morning and climbed up on the bed and asked if I was awake.

When I told her I was, she said to me, "Mom, I'm sorry for how I've been acting lately.  I need to work on my actions."   I told her I thought that would be a very good thing.   She then said, "oh, and I need to work on saying words like 'grrr.'"   I told her that was a smart move and if I could help her, to please let me know.   The saying 'grrr' was a specific thing she ran into with me.   I would try to talk to her about something—maybe even something she was interested in—but for some reason, if she didn't like how something went, she would say, 'grrrr" at you while you tried to explain.

This reminded me of the time a while back when she had insulted her friends and had to write apology notes.   She acted like she had no idea she'd done anything wrong until suddenly she capitulated and made it clear with what she wrote that she knew exactly what she'd done.   The same thing here, she knew very clearly what she had done.

She didn't ask if she could have more audiobooks.  But she did demonstrate that she knew exactly what she was doing that was unacceptable behavior, even though she denied it at the time.   I told her I thought if she was going to work on those things, I could relax the no new audiobooks rule and we'd see how it went together.   So far, it's been a very nice day with her.

The Big Boy Update: Before bath the other night my son came in while I was running the water and said, "Mom, is this how you make a baby? Boom, bam, activate!"  Imagine him doing kung-fu like motions with the above statement.  I said, "Yes, hon, that's pretty much how it happens."   He dropped his arms to his side and looked at me with a look of knowing as he said, "No it's not.  I know you take medication."

The Tiny Gitl Chronicles:  My daughter was talking to her father this morning when she declared, "I'm not afraid of anything except lawn mowers and spiders!"   Then she added, "and big trucks and wasps."

A Stroll in the Park

My neighbor and I went for a walk today.   We'd been planning the walk for over a week and were about to get going when she called with a complication.   Did I know if Kona Ica was making a scheduled stop in the neighborhood or was the truck driving around one you could wave down?  Her son had gotten his money and was ready to chase after the truck.  

There wasn't anything scheduled apparently so my daughter and I joined our neighbors in the chase.  Ten minutes later my daughter was happily spooning rainbow-colored ice into her mouth and my neighbor and I were about to head off into the park.  She said to my daughter, "you're welcome to come along with us if you want to."

This was not something I had offered to my daughter earlier, thinking it would be a walk in the newly re-opened park for us adults to talk about adult things, walking at an adult pace.   It wasn't a bad change with my daughter along, it was just a different experience.

For my daughter, she really liked going with us.  She hadn't been in the park in some time and the experience with her vision now was different.   She noticed when we went under large coverings of trees, saying, "it got darker."

She paid attention to all the changes in the path, picking up rocks and throwing them safely, after moving to a location and aiming in a direction that she knew for certain there were no people.   This sounds obvious, but it's a coordination of multiple pieces of information before you're ready to safely throw:  where are the people I'm with?  What direction am I aiming in directionally?  Where is the dog?  Are people coming up the path in the opposite direction?  Am I going to have the throw ricocheted back at me?  She really wanted to throw rocks.   And I mean really.  I had no idea how much she wanted to throw rocks.

What was most interesting to me was how my daughter wanted to be far ahead or behind us.  She had her cane with her for part of the walk but put it up, asking me to hold it.   The path was much lighter than the greenery and other material surrounding it.   My daughter was able to stay on the path with relative ease.   She would get close to the edge a good bit, but she'd course correct.

I told my neighbor I was paying attention because it was possible she was seeing her way safely along the path.   She could see the light change, but could she see the path?  I was fairly certain she could at least see some of it until right at the end.   There was a tight curve in the path and Lisa and I had moved on ahead.  I stopped to make sure she moved around the steep edging safely when I saw her turn so she was walking straight towards our voices.   Could it be she had been following our voices all along and not the path?  Some of the time she had elected to be in front of us and could still move along the path.   I just don't know.   I need more data.

One thing my daughter did without fail was to move aside for bikers and runners.   She would call out to us in case we were talking and not paying attention.   She would step to the side and stand still.   I would ask the dog to lie down until the traffic had passed.  She always heard people coming first.  

We ended our stroll—it wasn't nearly fast enough to be a walk—at about six o'clock, saying we should get together next week and walk again.  ]]

The Big Boy Tiny Girl Audio Book Zoning:  My son and daughter went outside after breakfast and hung out under the deck, sitting on chairs and doing not very much anything at all, for hours.   They are so entranced with their current audiobook.   There is only one more in the series and then they're going to be down about it being over.   It's after eight o'clock at night and I think they're still outside listening still.

Never Again

My daughter thinks she is getting another audiobook again.  Her brother understands it's not quite as dire, but he's not as dependent on audiobooks as his sister is.  I've gotten very negative behavior from both of them, although my daughter is leading the charge with irreverent, insulting, pessimistic, unhappy words,  towards other people.  

There has been a lot of disrespect towards their teachers and parents and, most disappointingly, they seem to only care about what's important to them.   I told them yesterday, after realizing that five minutes' social time with neighbors was too much of a burdensome price to pay for them because they would have to be away from the audiobook for those five minutes.

Last night and today they could have corrected course, my son did a good job for the most part, but my daughter refuses to adjust her attitude and so, there is a good chance this will be the last audiobook ever.    Or until they're adults, my son pointed out.   Yes, I agreed, until they were adults.

We'll see if my daughter's attitude changes.   I hope so because I know how much she loves audiobooks.

The Big Boy Update:   My son worked on a Tinker Crate from KiwiCo as the end of day assignment for school.   He put together a color changing light where he connected three LED's using transistors and switches.   He got down to the basics with this little project.   I watched what he was doing and wanted to jump in and help myself.   He didn't need me though, the project was created just for his age, although children my age found it interesting just as much.

The Tiny Girl Chronicles:  Several people in my daughter's life have done or made things for her recently.   I have been fighting with her to get her to correspond back.   I realized today that I cared about her corresponding but I realized she might not have.   When I decided I would contact them myself, instead of trying to get her to contact them, things got easier.   She says she cares, but I don't have to worry about her messaging them.   It reduced both our stress by a lot, I think.

Not Makeup

My daughter noted a while back that I get into things rather intensely for a while and then move on to the next thing of interest.   I don't ever fully abandon things, my interest just goes to a back burner state until needed.

Makeup has been one of these things.   I have plenty of makeup options to do whatever style I want.   I am lacking in some skills that would make the makeup look really good and I was running into some technical issues that were causing the makeup to look not so good.

Some of this is a factor of age and some is related to skill and knowledge.  The knowledge part is understandable.  The products these days are far superior to what I used when I was younger (read high school.). They perform well and are hard to mess up.   But there are some things I was still having trouble with.   The other area was colors.   I kept messing around with different colors and hadn't settled in on what I thought looked natural and complimentary on me.

Because I was less than satisfied with how things looked, mostly thinking it was a net sum zero when I was done putting everything on appearance-wise and a negative on the investment of time in order to get to the look, I stopped rushing about in the morning, trying to get seventeen products on before heading out the door (these were pre-COVID-19 mornings.)

I kept up with watching videos from some of the people I was following though.   The one thing that I've seen again and again is something I just wasn't doing—at all.

My daily skincare routine has always consisted of this:
   1)

If that looks like an empty list, it's because it is.   I've never worn makeup, but I've also never had any skincare regime.   I don't even wash my face aside from when water gets on it in the course of washing my hair.  What caused me to delve into the world of makeup in the first place were two factors.   The first is I always think I need something when I get to lose color I had from the summer months.  Maybe makeup could help?  The second was I was just looking older.

All these young, beautiful, beauty gurus looked fabulous.   If I put on makeup like they were doing, maybe I could look like I was younger myself.   More stylish.  Less drab.    I didn't find an easy and quick path to a more radiant, youthful me, so partly because of that and mostly because of the time commitment, I dropped the makeup aside from special occasions.

With one exception.   What I kept hearing about in video after video was the need to hydrate the skin and moisturize.   There were steps you needed to do before you ever got to the makeup.   One product, hyaluronic acid, kept coming up.   It's a humectant that acts like a tiny sponge, holding up to a thousand times its weight in water.  That, along with a moisturizer were the pre-makeup steps.

I started just doing those two things and I've been amazed because moisturizing my skin has made me look a lot better.   It's helped with the wrinkles.  I've been so impressed with these two, not makeup, steps that I haven't even needed to put on makeup to look younger and better, I think.  And that's a whole lot easier than makeup.

The Big Boy Update:  My daughter is going to do a stained glass project for her retired braillest.   The project is in a box and she knew some things about it, but my son, of his own accord, said, "can I see that so I can describe it to Reese?"   He very accurately told her about everything in the design, starting with the largest elements, "there's a rainbow in the middle with two dolphins, one on each side above the rainbow."  He went into further detail and she listened carefully.   She will be putting individual elements into the project but just like someone creating a cross stitch pattern, it's hard to get a sense of what you're making when you're working sone small element at a time.   I was proud of my son for offering to describe the project to her.   He did a very thorough job.

The Tiny Girl Chronicles:  My daughter was working on a list of her classmates today, adding a descriptive adjective for each one.   The student's lists will be combined and each person will have their own list of character traits that their friends think best describe them.   When formatting the file I had tried to get the list all on one page—which I had done successfully—but the information was a little tight.   My daughter was moving up and down rows, rolling the paper fractionally in and out of her braillewriter as she changed her mind or wasn't sure what to do about one friend yet and had skipped forward.   I wasn't sure how she was keeping her place and apparently I wasn't alone because she cried out from her desk, "Help, I got off course!"

Soap Talk

The children have been transitioning from bath to shower recently.  Tonight, while the children were in the shower, I was putting up laundry.   My son called out to me asking for their shampoo and conditioner from the tub.  My daughter had found the squeegee and was cleaning off the glass door.

They were talking about soap.   My son said to his sister, "This one is different.  You rub it in your hands.   It was bigger but it's pretty small now.  My son had just explained what a bar of soap was to his sister.  It turned out she had seen one before, but my son, on thinking it was something novel, told her about it.

I think I have decorative soap somewhere in the house now, but it will never get used—everywhere we need soap there is a bottle with.  Even for the shower, there is body wash in a pump bottle.  Until my children had the shower conversation tonight I hadn't realized much bars have been overtaken by pump bottles.

The Big Boy Update:  My son just came doan saying he still hadn't fallen asleep (at almost midnight.). He said his bed wasn't comfortable.   He's not happy with his bed lately and we're not sure why.  I think changing the sheets will help so tomorrow I told him I'd change them.   He may be imminently on track for moving out into another room.

The Tiny Girl Chronicles:  My daughter and Shane made the most delicious chocolate chip cookies today after school.   Warm, cooked to perfection chocolate chip cookies are the best.  

Caught Up

I was behind on so many things for so long.   I'd get caught up on one thing and then get behind on another.   Once we started schooling at home I lost a lot of time working with my daughter.   I really thought I was going to get massively behind at first.   But then something happened.

The amount of "stuff" that would come my way, that needed doing, dropped off.   There was less happening in the world and less got to me that needed attention.   I was busier than ever at home, but I wasn't getting behind like I thought I'd be.

There are several things that make me very happy when they're empty: my inbox, my paperwork, and the several locations in the house I stack things that need to be taken care of in some physical way or another.  

My email inbox never got out of control.   The reduction in email noise has been so nice.  I've still got a stack of things I need to take care of, but it's not insurmountable.   The house goes in and out of messy and clean, depending on where things are with school work and projects related to the children, but it's manageable as well.

I have been taking braille courses for several years now.   I need to do one class section at a minimum per month.   Because of COVID-19 I got a stay and have been meaning to get back to class for a while.   I checked last week and the last time I turned in an assignment was in January.   By now I've done so much more braille reading because my daughter is working from home.   I figured I could fly through the materials for my class.

It was far easier than the prior lessons had been.   I got a 96% on the final, which isn't a bad grade given all the mistakes you can make with the rules of UEB Contracted Braille.   I was happy with the grade.

I got a break in things yesterday and decided to look ahead to the next unit and see how intensive it was going to be.   Today, I turned in the next assignment.   I was able to move through the material more quickly because some of the contractions were mathematical symbols like addition, subtraction, percentage, equals, feet, and inches.  Knowing those made the lesson go quickly.

Today, I've turned in my next lesson in record time.   Now, if I need to correspond with anyone in braille about how much something costs in yen, euros or pounds, I can do so with ease.

It's nice being caught up with a lot of things in life.   I like the feeling of having accomplished something, even if tomorrow more emails will come in and the work will just reappear and multiply.   For today, I'm on top of things at least.

The Who Gets Dressed Update:  Recently, my son has decided he wants to get dressed in the morning.   For a long time, he was happy to spend the entire day in pajamas.  He's decided his sister should also get dressed for school though, something she has no interest in doing.   While we're here at home, I could easily put all her other clothes in storage and let her live out of one drawer of Pajamas.

It’s Not Fair

Last night while I printed out my daughter's materials for this week of school at home, my husband and children were on the trampoline in the back yard.   I heard them boisterously jumping and playing trampoline games.   At a certain point, something went wrong and the children started yelling, saying each had hit or punched or kicked with intent to wound the other.

My son ran inside and locked both doors to the basement so his sister and father couldn't come in.   I had him come over and I asked him to tell me what happened, using an understanding tone.   My son was mad because his sister was in near hysterics outside, saying her brother had intentionally kicked her in the face.

My daughter does this and sometimes her reaction is warranted.   My son is much more aggressive physically than she is and much of the time, his attention is unwanted by her—but not always.   She is just as shall we say "mean" as he is when the mood strikes her.  She, however, reacts emotionally and it gets our attention.   It is highly probable that my son gets in trouble more often than is strictly warranted.

There is a history of head trauma parent overreactions as well.   My son was upset.   He said to me, "Tell me the truth, if she got hit in the head with a mallet and I got shot in the head, who would you go to first?"   Serious question, right?  And it shows my son's underlying feelings of being less important to us.

I told him I would go straight to him, but that's because a gunshot would is much worse.   However, I said, he was right, we worry about head trauma to his sister because of how delicate her eyes are.  I told him things I thought he knew, but he didn't mostly because he was too young when it happened and because he doesn't care about adult conversations so even though I've told the story probably a hundred times in his presence, he's never paid attention.

He didn't understand how his sister's eyes were malformed from birth.   I explained how she had bad blood vessels in her eyes and compared it to when his arm goes to sleep.   His arm wasn't getting enough blood, so it wasn't able to function well.   In her case, her eyes were barely getting enough blood and any damage to them caused damage that would cause permanent loss of even more vision.

He didn't remember the time a single hit to the head (which we don't even know how happened) caused a bleed inside her eye and made her completely blind for two months.   I told him this was back when she could see a lot more.   I talked to him about all the surgeries she had that we did to try and save her vision, but that her eyes were just too delicate and they couldn't function normally.

He remembered going to the OR to have his eyes looked at, but he didn't know why.   I told him it was because Dr. Trese, who had never met him, wanted us to have his eyes checked because he didn't want him to lose his vision too.   I told him after that visit to the operating room we found out his eyes were just fine.

What does that mean for him, though?  I told him it wasn't fair.   I said it wasn't fair to him that his sister was blind, that she had lost her vision in such a complicated way.   I said it wasn't fair to him that we worried about her getting hit in the head.   But we worried about him just as much.   We just didn't worry about his eyes.   I told him I worried about him every day, but that I also knew he would be fine and that he could accomplish anything he wanted to.   I knew he was going to do great things,

What did it mean though?   I told him the reason his sister had the Apple Watch was that while she was very capable, she could get lost and not know how to get back.  It was why, when he told me he'd left her at the pool area (where they've been playing lately) alone the other day without her watch, I said he had to go right back.   Then I told him about the time she called because she was lost when she was right across our street, stuck between a trash can and recycle bin.

I told him another thing.   I said this conversation I wanted to be between him and me.   One thing we never wanted to happen was for his sister to feel anything less than capable.   He's seen her zip around the house and he knows she can navigate quite well, even though she can see almost nothing.   The problem is, people who can see don't realize just how much a blind person can accomplish.   We didn't want her to ever think she couldn't do anything, just because she can't see.

I told him at the end that I knew it wasn't fair.   But that we loved him just as much and worried about him just as much.   But we also knew how capable he was and that if it seemed like we didn't care, it was more likely that we knew he could do it all on his own.

I think he understood more after the conversation.  I hate that he feels like we don't care about him.   It's not fair to him.   He bears a big burden, being the sighted sibling of a blind child.   He helps her all the time and does it in a positive way.   He's learned how to be a help to her and never makes her feel less capable, just because she's blind.

The Big Boy Update;  My son is having a hard Monday.   His most stressful point with school today is that the format of the paper on which he is writing a letter to a relative just isn't "right."   It was slightly different from his standard paper.   He doesn't like change.

The Tiny Girl Chronicles:  My daughter is mad at me.   She has her money and she wants the next audiobook in the Percy Jackson series and I am a mean mother because I won't get it for her before school is out.   "I have no right!" she told me.

Mother’s Day Overboard

My daughter has been planning for today for a full week.   She wanted to make sure it was a special day—and she succeeded.  She enlisted the help of her braillest,  Ms. B., and her father and for a full week, I wasn't allowed into the craft room while things were prepared.   This morning I was told to stay in bed, to not do anything—particularly opening my eyes.   She was doing something in the room and I wasn't supposed to be looking.   I was told to not look, but also to not fall asleep.

At 8:26 (four minutes before 8:30) she and her father went off to begin preparations.   The preparations were mostly dad making breakfast of pancakes (in the shape of M O M) and bacon, a meal I love, regardless of the shape of the pancakes.

My daughter brought me a strip of paper with some braille on it.   She had made me a treasure hunt with each strip of paper telling me where to go and look for the next piece of paper—or present.   After several strips of paper, I'd traveled over two floors and had found a bouquet of paper flowers, a container of licorice in a glass jar conveniently hidden in the dog's cage beside the bed and a message with about as much dimensional elements as could be held by one sheet of orange (my favorite color) construction paper.



My son had helped her with the 'GIRLS RULE' message, she said.  I continued on to find a purse she had made out of more orange paper, decorated with stickers and a braided handle she'd worked on with Ms. B.  Inside was another type of licorice.   I'd been hearing about dad going to, "get lamps" all week.  Apparently 'lamps' was code for licorice, another of my favorites.



One of the places I had to look was behind the sofa in the living room.   She ran behind it for me and pulled out from underneath a huge maze made out of straws.   There are all kinds of 'traps' in the maze, she told me, as well as multiple things that were treasures.   See if you can find your way from the top left to the bottom right, final treasure.   She and I are going to do the maze with a woolen ball later to see if we can make it all the way safely in one go.



Second to last was a bracelet she made not once, but twice as the elastic broke on her and she had to start over.  here it is on the sheets of braille paper with her instructions as to where to look next in my Mother's Day treasure hunt:



The last treasure, and the one I forgot to get a picture of was a booklet, including tactile pictures she drew with her Draftsman, with all the things I love and lots of messages from her hoping I would have a happy Mother's Day and telling me how I was the best mother in the world to her.   I don't know that any mother could have been more proud than I was of my little girl this morning.

The Big Boy Update:  My son made me a card, but he was upset he didn't have as much for me so he told me in his note he hoped I liked all the things his sister had made for me.   I hugged him and told him his card meant just as much to me.   He hugged me (a rarity at this age) and then ran off to bike with friends (at a distance, of course.)

The Tiny Girl Chronicles:  My daughter decided later in the day that she a) hated me and b) wished she'd never made me any of the things she did because we had to look at a spot on her inner thigh that looked like it could be another abscess brewing.   After we were done looking (which is hard to do when your strong eight-year-old is fighting you even getting a glimpse of the location that turned out to be okay) she decided she still liked her father and me.   It was touch and go for a few minutes though

Audio Book Battles

I have mentioned we are audiobook enthusiasts here.   I've liked them for a long time because I can listen to a book and get something else done at the same time.   I've been listening to the complete works of Sherlock Holmes for a while now, catching bits and pieces of each mystery as I get in and out of the car on short trips.   I'll be sad when there are no more mysteries to go.

My daughter is the biggest fan of audiobooks in the family though.   She has been using her money to buy credits recently for the Percy Jackson original series and now the follow-on five-book series.   When my daughter binges on a book, she is single focused.   Morning while eating breakfast, during breaks from school, after school, on the speakers in the back yard while she jumps on the trampoline and during meals if we aren't having a family meal and family conversation.

My son likes the same books, but typically he's into other things.   In the case of the Percy Jackson books though, he's been right there with her, including watching the movies together.   There's been one difference though: my son has other interests.   After school, if he's gotten everything done and has worked hard for the day (which he has been doing more and more lately) then he is allowed some screen time.

Which means he's behind his sister in the audiobook when he gets back to it.   This poses problems.   The audiobook has been purchased on my account, which is also connected to Alexa.   The children can go to any device in the house and ask Alexa to play a specific audiobook.   Audible will ask you if you'd like to pick up where you left off last time.   That's great—for the first child listening.

When the second child goes to a different location and starts playing the audiobook it will pick up chapters ahead potentially.   This isn't a real problem for my daughter because she is adept at navigating around with Alexa.   I honestly think she tries thing after thing, phrase after phrase until she figures out how to do things.   I was putting laundry up one time and overheard her change chapters. move a certain number of minutes forward, then back up thirty seconds.   I didn't even know you do those particular phrases (and I could have used those options on more than one occasion.)

My son, however, had finally gotten the audiobook to the right place yesterday around dinner time.   He didn't want to come to dinner because if he stopped playing the audiobook the position would set to where his sister was currently listening.   He wanted to stand in the doorway of his room for the balance of the night so he didn't get lost in the book.

Today, they started a new book.   My son had a parade of cars to wave goodbye to a classmate who is moving.   He pitched a fit about the audiobook before he left because his sister would be further along if he went on this "stupid parade thing" (or some equally unkind words).   He and his father decided to listen to the book in the car, causing another audiobook split that will have to be dealt with tonight.

The Big Boy Update:  My son wanted to watch Dr. Strange last night.   I sat down with him, intending to watch five minutes but not moving from the spot until the movie was over.   I like that movie a lot.

The Tiny Girl Chronicles:  My daughter lost her shoes.   This happens relatively often becuase she pulls them off and doesn't make a mental note of where she took them off.   Mostly she knows where they are though.   Today she and I looked all over and ultimately had to go with her backup pair because she was getting geared up to go biking at 4:00.   She came back a little later and asked if I could message Keira's mom to see when she'd be out.   I asked my daughter if they were still doing their 4:00 meet on the weekend since today was Saturday.   She said, "oh yeah, we decided to take a break".  I thought she'd be disappointed after getting all ready, but she seemed fine to not have to go biking, even though it's her favorite part of the day.

A Whole Different Kind of Friday

When my children were in school in the traditional way: get up early, go school, teachers deliver comprehensive education to your child while you go to your job, children come home, homework is done, dinner is had, bed, rinse, repeat.   That kind of thing.   It was in those days (it seems like a long time ago right now) that weekends had a different feel than they do now.   Weekdays the children were gone, weekends they were here during the day.   Now, they're here all the time.

Weekdays are more burdensome on the parents.   I don't know how it is on the children, they're still going to school in a distanced learning kind of way from home.  For the parents, it's suddenly trying to be a teacher's aid across an electronic divide.   I think parents have been giving it their best go and most have been doing a pretty good job.   Parents typically want to do their best for their offspring.

My husband and I are exceptionally fortunate.   We have the time to dedicate to our two children while they're at home.   We have teachers who not only working to help out our one child, they're helping out all the children and parents in their purview.   It's got to be crazy hard.   I ran into my daughter's kindergarten teacher a few days ago.   She said it's been hard on her because she's a touchy-feely person and she needs that contact with her children.   They're not reading and writing that much in kindergarten, but she said the hardest challenge is the students who don't speak English.   She said it's so hard to communicate across a screen to the child and then to not be able to communicate with the parents because they don't speak English either.   I can't imagine.

Guess what?  I got off topic again.   That might be my superpower, "Able to Distract Herself Within a Single Paragraph!"  Where was I again?  Ah, yes, being fortunate.   We have the time.  We have dedicated teachers.  And for my daughter, we have the technology to get her materials she can consume with her fingers.   As she told one dad when he had a tiny baby she wanted to feel, "I see with my fingers."   My daughter can excel.   She will be successful.  I have no doubt about that.   And we are helping her achieve independence and success with technology.

Remember that embosser we got?  The embosser that I love and can't imagine life without now?  That's the one.   Here's a stack of all the work my daughter did this week.  You can see the white pages from the embosser because they have little remnants from the continuous feed holes on the edges we tore off.  Those white pages are work we wouldn't have been able to get to my daughter's fingers.



The manila pages are ones my daughter put in her braillewriter and typed.   She wrote an informational book, did lots of math work, completed work about the life cycle of a butterfly and probably other things I'm not remembering because it was a long week.

There is more by way of things we're printing out for her.   She's devouring stories written by her gandmothers and loving how they're writing just to her.  And now that my daughter know she can ask for things she wants to read about, she'll just ask.   I created an informational booklet about snails so she'd be informed on how to care for them.   This morning she wanted to know if I could create another booklet about earthworms.

I can't explain how exciting this is to me.   My daughter can't look at a screen, watch a movie, browse the internet.   At this age she needs help getting information.   Any sighted child is inundated with visual stimuli all day long.  Ads, commercials, signs, things at the grocery store: all ways a sighted child might find out about something and become interested.   So when my daughter finds out about something she's interested in—now I can get her information to learn on her own.   I know I'm probablycoming off as over-zealous but it really is huge.   [/soapbox off]

So our weeks here are school and my son and daughter both have the same ability to learn at home with the guidance of their children's teachers remotely.   Friday has a different feeling for us, as parents, though.   In the past we would want to have the weekends be meaningful activities as well as some down time.   The children are working so hard during the week though (and so are we as their parents making sure to pack in a full week of school) that when the bell dings on Friday indicating school's out, I'm the one dancing and shouting, "yee haw!" as I throw my hat in the air.

Okay, I don't shout yee haw and I'm not wearing a hat, but that's what it feels like.   The children get their own breakfast and let us sleep in on the weekends for at least one extra hour before there's a disagreement over something trivial that needs parent involvement.   Right now, I think I'm more excited about it being Friday than my children are.

The Big Boy Update:  My son came upstairs while I was writing this post and started asking me about the song I was listening to.  I tried giving a carefully framed explanation about Dear Evan Hansen.   He left with the LEGO's he had come to get.   He was back about three songs later and asked what was going on in the play now.   I tried to give fractional information to help move him along.   He said, "so he was lying to everyone?"  You know how this goes with children.   It took two more trips into the room here for more LEGOs before I think I got him feeling that the people singing were good people.    He disappeared downstairs with the drawer of green LEGOs and I didn't hear any more about it.   I'm sure it'll come back around, knowing my son.  The song, "Anybody Have a Map?" from Dear Evan Hansen is quite applicable, now that I think about it.

The Tiny Girl Chronicles:  I started writing this post five hours ago and I have no idea if I even finished any of my thoughts or even sentences above.   My husband tells me dinner is ready so I'll end by saying I came home today from a fast drive-through trip to the pharmacy to see my daughter with her mini back-pack strapped to her body, her helmet on her head and her little feet pedaling down the street as I approached.   She heard me coming and pulled into the driveway closest to where she was. I rolled down the window and said in a low, gruff voice, "little lady, you need to be careful!"  She said, "aw, mama, I AM careful!"  How does she always know?

The Best Zoom

Google Meets, Zoom meetings, Facetime, voice conference calls, electronic meetings of every shape and flavor have been the primary way for adults and children to communicate during the Safe at Home time of COVID-19.    It's just a normal occurrence to the children and they think nothing of it.   Calls in pajamas are one of the best plusses I think we would all agree on here.

I've attended good and bad calls.   There is the problem where someone is new to the technology and can't figure out how to mute so they keep crashing into the call with their accidental audio.   Sometimes the resolution isn't great due to a poor connection on one end or the other or, and this is more likely, the ISP is throttling the data because there are just too many conferences going on at the same time and there's not enough total bandwidth to get all the children in video conferences at 9:00AM.

I had one birthday call that was a nightmare to tell what was going on with terrible resolution and an almost psychedelic flickering of faces to the forefront as everyone tried to talk unintentionally crashing into each other's sound.

Tonight I had the best video call though.   My nephew, Kyle, is graduating today.   He's at home and there is no graduation ceremony.   His diploma may be in the mail at his condo in Florida and he's not sure how or when he'll get it.   So tonight, his mother coordinate a call with close family.  

Kelly got it just right.   She hit the Goldilocks Zone for a Zoom call.  We could all fit nicely tiled on the screen and we didn't have to be on mute if we weren't the current speaker.   We congratulated Kyle and then had a good time catching up as a family.

The Big Boy Update:  My son heard Madison, Kyle's girlfriend for many years, say hello to him on the call tonight.   He got shy!  He disappeared and tried to come up with something he needed to do outside, which I didn't let him do.   I think he remembers her and still has a crush on her which started over four years ago.

The TIny Girl Chronicles:  My daughter wrote a "Biopoem" today about Kyle.   It's a certain format of poem that starts and ends with the person's name and describes them in the lines in the middle.   She read  it to him on his graduation call tonight.   It was cute.    

Nothing

My daughter found a flashlight the other day.   I watched as she held it up and put it directly in front of her eye.   I know you're probably having the same mental reaction to yell, "No!  Don't ever look at bright lights directly."   Other things like how it will damage your eyes come to mind as well.   But in this case, I just stood there and watched her.  

I asked her what she was doing when she pulled it away from right in front of her eye.   She said, "I was checking to see if I could see anything with the right eye."   This is the eye that sustained the most damage from the infection and follow-on months, years even of ocular challenges.   Failure to thrive is a phrase I would say could even be used.   She had a collection of things wrong or unstable in her eyes.  It didn't take much to tip the scale, causing a catastrophic collection of events to occur which ultimately took all the vision from the eye.

I asked my daughter, "could you see anything?"  "Nope, nothing at all," she replied in a rather upbeat sort of, "I just verified something I've been suspecting for a good while now and it's good to have an answer" kind of way like a lab technician might note results on a clipboard.

She then wanted to shine the light in the left eye.   This is the eye that has some very unknown amount of vision.   It's so hard to tell what she can and can't see.   Is it shadows and large forms only?  She zips around the house and any areas she knows well.   She isn't completely accurate and can still bump into walls.   She doesn't know where things are in front of her or far away.  I don't think she can tell colors but maybe she can know that something isn't a dark or light color.  It's very hard to tell.  

It's easy to want her to see more than she does so I always wait until I have proof she can see something.   She can magically see a lot of times.   This is a term I'm using for situations where my daughter will tell you or someone about a thing that would indicate she could see it.   She's tricky.   If she's heard someone else talk about it or remembers it from before or any number of ways in which she could "see" something when really she "knows" it.

When she held the light up to her left eye the other day, I let her do it because she needed to find out what she could see for herself.   I asked her if she could see the. W light and she said, "of course" in a tone of voice that said she couldn't believe I'd even asked her that.   Then I asked her if she could see shapes and things and she told me she could see lots of things.   We didn't get into more than that. She says she's only half-blind.   Finding out what that sighted part sees is very hard to nail down.

The Big Boy Update: My son likes to be a parent.   He wants to mostly be a parent when it comes to doling out punishments.   This typically means his sister.   I think in part he's trying to help.   It doesnt come across that way to his sister though.

The Tiny Girl Chronicles:  My daughter came into the bonus room where I'm working here and stated, "I need this room" in a definitive tone.   I told her I was still working but she was welcome to work with me here.   She got her braillewriter and a stack of about fifty sheets of braille paper and left.   I asked why she needed to leave and she told me it was something for mother's day and she liked to talk to herself out loud while she typed and so she had to go to another room.

Butt Quarters

This is a strange post.   You can tell by the title, right?  It's something my best friend from childhood messaged me about two days ago that got us both a big chuckle.

Have you heard of, or do you remember the drinking game called "Quarters?"  It's fairly simple, as most drinking games are by necessity.   It has to be simple enough to do when you're drunk.  In the traditional game, or in the version we played (I'm sure there are numerous variations) you bounce a quarter on a table and try to get it to land in a shot glass or other cup.   If you make it, you get to pick who takes a drink from their glass, if you miss, you have to take a drink.

My best friend and I were living together in the first location I ever lived alone—a small townhouse I'd later buy and live in for many years.   I'm not sure who's idea it was, but we decided to put the cup on the floor and the quarter between our butt cheeks (pants on, of course).  You then had to waddle across the floor, making sure not to drop the quarter in the process, until you were standing over the cup.   You'd then let go and hope the quarter landed in the cup.

The same drinking rules applied once the quarter was dropped.   Nothing like a little physical humiliation added to a drinking game, eh?  I don't know if we heard about the game or made it up, but she messaged me the other day telling me she heard it mentioned by someone online and it brought back memories from over half our lives ago.  

Good times.

The Big Boy Update:  My son knows I've been stressed out over the workload my daughter has.   It's more the complexity of completing the workload and the number of online meetings she's attending that are making her day a busy one and me frustrated as I try to ensure we're getting everything done on time.   He told me I was doing a good job and I should know I was a really good mom.   He is my sweet boy.

The Tiny Girl Chronicles:  Chelsea, our music therapist, and I worked for several hours today to create a single sheet that would introduce braille music symbols.   We were pretty proud of ourselves and we thought my daughter would be excited.   She was anything but.   She shut down and refused to do anything.   The problem was that the braille dots that represent certain length and key notes are also braille letters or contractions.   She was unable to disassociate the two so she could see the braille cells as music information instead of letter information.   We're going to have to back up and start more simply to get her engaged.   She wants to learn, but today was just too much at once.