Wax Museum

My daughter participated with all the first graders today in a wax museum event at her school.   Parents and grandparents entered the gymnasium to find it filled with children, standing very still, holding a sign with their famous American on it, waiting for their button to be pressed.  

There were a lot of astronauts, famous politicians, sports players and even notables like Walt Disney and Charles Schultz.

The children didn’t look nervous even as the crowd of adults swarmed in and around them.   They had memorized and rehearsed their lines and were dressed as their character.   We went around pressing buttons and without fail, the child launched into their short speech, most in a quiet but confident voice.

My daughter’s speech was:

Hi, my name is Amelia Earhart.  I was born on July 24th, 1897.  I am famous because I was the first female pilot to fly solo across the Atlantic Ocean.   I was flying around the world when my plane disappeared over the Pacific Ocean and I was never found.  I died on January 5th, 1839.

My daughter asked how they knew what day she died.  I told her I had that same question.   Perhaps it was the day after they lost contact with her?  

The Big Boy Tiny Girl Four-Thirty in the Morning Update:  This morning at four-thirty I heard the children come downstairs together.   They never do that.   Then I heard them shut the door to our bedroom.  They don’t do that either.   I heard them in the living room talking quietly, but before I could rouse myself out of bed to investigate I fell back asleep.  

When we got up at seven, my daughter was excited for us to come see the living room.   They had been up since four-thirty, watching television and making a fort with chairs, blankets and pillows in the living.  Oh, and they’d decided to serve themselves breakfast.   They had eaten all the marshmallows out of the Lucky Charms cereal.   Without milk.   And while I was proud of the fort construction, I was not happy about the other choices they made and talked to them about the meaning of a good breakfast and how marshmallows alone did not qualify.   They helped clean everything up and agreed to some penance (eating the remaining oats cereal without marshmallows this weekend).   I was proud of their initiative and cooperation I told them, but next time do it on a weekend, please?

Dinner Phone

I put my phone up to charge a lot of the time before we sit down to dinner but I’ve had to stop the habit because my phone is a necessary thing for the content of this blog.   My children say the best things while we’re at dinner.  All of the content for this post was captured at dinner.  About the time I’d put the phone back in my pocket, someone would say something else and I’d pull the phone back out to get their wording down so I’d remember it correctly for later.

Tonight my son was sitting up at the bar, because he didn’t want to sit with us.  Who knows, he’s a boy and eight-years-old and sometimes parents are just not that cool.   My daughter, on the other hand, wanted to pick who she got to sit by and then was having none of the adult conversation, because it wasn’t what she wanted to talk about.

We did “up and down” where we list something we liked that happened in the day and something we didn’t like.   My son would be fine with the game being as advertised meaning an ‘up’ and a ‘down’.  My daughter, however, likes to have more than one up and down—sometimes lots of each even.

We got into a discussion about my daughter’s school tomorrow in which her class will be wax models  of famous people in American history.   She practiced her Amelia Earhart lines for her brother and then told us her braillist wasn’t going to be there tomorrow because her husband’s uncle had died.   My husband asked if they were going to the funeral and we found out my children didn’t really understand what a funeral was.

We talked about how it’s a way for people to gather together and remember the person who had died. And that transitioned into a ceremony my husband had attended while on the ski trip.   My best friend’s brother-in-law had died and had asked that some of his ashes be spread on Solitude Mountain.   They all gathered at a copse of trees on the mountain and Matt spoke about his brother, Carlos, and then they spread the ashes.

You know children, right?  This brought up more questions about what happened when you died.   The ashes part was easy because we have a Lucy tree in the back yard with Lucy’s ashes under it.   This was Carlos’ ashes on the mountain.

My husband said there were two main things that happened to someone after they died: they were buried, "in a box, underground,” he said,   Or your body was burned in a hot fire and the ashes that were left over afterwards could be put wherever the person wanted.

Honestly, both options sound sort of horrific if you’re not sure at all about death and you’re a child, but my children didn’t seem overly bothered by it.   My daughter said she would rather be buried underground.   My son said, “I don’t want to be cremated.   I want to be used for experiments like mom."

Ah, yes, the donating your body to scientific research option (that I have a specific will for).   We had forgotten all about that route.  I told him that sounded like a generous idea.   Honestly, I’m not sure if he didn’t like either of the first two options or if he just liked the thought of being part of experiments.

The Big Boy Update:  My son wanted to play blindfolded Twister with me the other night while his sister and my husband were at a Y-Guides event.  Only my son had some new rules.   The rules went on and on and I had to stop him short, saying we weren’t ever going to get around to playing if we added any more rules.   It was a mashup of Twister and Fortnite.   You started off with one hundred health and would lose or gain health from certain colors.  Then there was the attack phase which deducted points for any limbs adjacent to another.   You could level up your attack damage if you got to one of the circles.   It sounds crazy, but the game held together and was a lot of fun.   The only challenging part was totaling up all the damage done to each person when we had arms and legs all in proximity to one another.   I’d play it again.

The Tiny Girl Chronicles:  I’m not sure how, but the number twelve came up tonight at dinner.   My daughter said, “No! That’s my least favorite number.”   I’ve heard of lucky numbers and favorite numbers, but never a least favorite one.   When I asked her why though, she had a very specific reason: “because of a worksheet in kindergarten where almost every answer was twelve.   There was only one answer that was not a twelve, and that was a nine.”

So Fluffy:  I took the dog to get groomed today.  I give he a bath and brush her fur regularly, but the hair around her face was growing in a way that I wasn’t sure how to handle.   It was blocking her vision and flopping around in a way that made her look scruffy.   Tonight, she can see again—and she’s very fluffy.  This is her, “please can you let me out again, didn’t you hear me ringing the bell?” face.

What a Great Idea

When I was in Cancun with my girlfriends we went out to eat several times and each time there was something available, all around the seating area I’d never seen before: a purse rack.   It was like a coat rack, only at chair height, for ladies to hang their purses on.   Here’s what they looked like:

This is such a great idea.   I’m always figuring out where I can put my purse.  Sometimes it will hang on the chair, but that doesn’t work on a lot of chairs.   Sometimes I put it beside my chair but that can interfere with traffic patterns.   Sometimes we’re in a booth and the cleanliness of the floor under the booth is in question or it’s cramped under the table.  With booths, the width of the seat can make having the purse beside me cramped.   There are all sorts of things we do as ladies to find a place for our purse given different seating scenarios.

But this purse stand is great.   It worked well everywhere we went.   I wonder if it will start to be adopted in the United States in the future?

The Big Boy Update:  My son and daughter like to have Alexa play something on the Amazon Show screen while they’re eating breakfast.   My son gets into the show and can lose track of time—but he’s responsible for getting himself ready for school to depart at eight o’clock.   This morning I could tell he was watching a Miles From Tomorrowland show that wasn’t going to end until two minutes before we left—and that wasn’t going to leave him enough time to get his teeth brushed, shoes & jacket on and icepack in his lunchbox and then into his backpack.   I paused the show and told him not brushing his teeth wasn’t an option.   So he multitasked.   He ran into the bathroom and brought his toothbrush and flosser back into the kitchen.   He got his lunch box ready and put his socks, shoes and jacket on at his chair.   He got everything done in time with a lot of running back and forth.   We’ve been working on complimenting him and even though it wasn’t my ideal way for him to get ready, I told him I was impressed at how he got everything done in time when we got in the car—right at eight o’clock.   Instead of getting in trouble, he was praised for his creativity.   It was a positive morning instead of a potentially negative one.

The Tiny Girl Chronicles:  My daughter had a paragraph she had to memorize for the Famous Americans event her class is having on Thursday this week.   She took memorizing her lines very seriously.   She reviewed and practiced for about a half-hour this weekend and got the lines down.   She has complete confidence for the upcoming event on Thursday in which she’ll be dressed as Amelia Earhart and have a button on her shirt.   When someone presses the button she comes to life and recites her lines.   She’s looking forward to having her father and me come to see her at school for the event.

Interested in Books

The Big Boy Book Update:
At the end of the night my son likes to read books.  He sometimes does this in the closet because the light is bright and the books are stored in the built-in shelves there.  For the past few nights, I’ve noticed he’s laid out a few books on the floor, putting them beside each other in a grid pattern.  These were some comic-like books and of course the 2018 Guinness Book of World Records book, which is one of his favorites.

He asked me if I thought there was a Guinness World Record for the most books laid out?  I said I wasn’t sure and then left, reminding him to not stay up too late.   As I came downstairs to write this post I heard a flurry of activity coming from upstairs, notably from the closet-area of the children’s room.

A while later my son came down, asking where dad was?  When I told him dad was at a neighbors helping out with something he asked me if I could come upstairs, he had something to show me.   I said, “well, I’d better bring my phone in case I need to take a picture” and smiled at him.

As we came into his room he said, “you sort of have to step carefully” and fractionally opened the door.   He had done what I’d surmised he was doing: he’d laid books out fully covering the floor of the closet.   He wasn’t sure if it was a record or not, but he was thinking about continuing the spread into their bedroom tomorrow.

He was so proud, he wanted to get in the picture I told him I had to take of his handiwork.

The Tiny Girl Book Selection:
My daughter brought new library books home from school today.   She came inside just as I’d gotten on the phone with Uncle Bob and said, “back pack heavy!”  After I got off the phone I opened her back pack up and pulled out all the things she’d had added to it through the day, including completed work, the new book she and her VI teacher have been working on for two weeks on Cultures of Kindness and the new library books.

Two of the books were the next in a series we’ve been reading at home.   She remembered what book was next and had asked for them.   The next book though just made me laugh.   If she were a sighted child that could visually peruse the library shelves and pick out something of interest, I’d have been proud of her, but as a blind child, how in the heck did she find this book to check out?

It turns out her teacher had suggested non-fiction and then they figured out cars might be interesting.  This was all done via the card catalog apparently.   Ms. B. asked my daughter what kind of cars she was interested in and my daughter said Tesla.   When I told her I liked her choice she told me she though I might want to do some more research about Tesla.   I told her we would definitely read this (chidren’s) book together.

A Sit on My Butt Day

Yesterday morning my daughter and my parents went on a train ride to a nearby city.   My parents had the idea to do this with my daughter because it was something involving motion and sound while not being as much of a sight thing.   They picked her up at nine o’clock and my son and I were at home together alone until later in the day when my daughter would return and my husband would get in from his week of skiing.

Earlier in the week my son had asked me if maybe on Saturday or Sunday we could see if his sister would want to go to Biscuitville.   My son and I love breakfast there, but it’s more of a drive than we’d do on a school morning and we reserve it for weekends every now and again.   I was expecting my son to be excited about the idea but when I initially brought it up he wasn’t so sure.   He didn’t want to get dressed and he also said it was farther away and maybe we could just do McDonalds instead?  

I told him that either was fine, it was something he and I would get to do together and he could let me know what he’d decided when his sister had left.   About an hour later my parents and daughter departed and as I was shutting the door from waving goodbye, I turned to my son and asked him what he’d decided and where did he want to go for breakfast?

He sat down on the stairs and said with a tone of despair in his voice, “I don’t want to go anywhere.  I just want to have a sit on my butt day.”

I laughed and told him that was fine with me, we could just stay at home and relax and eat breakfast in.   Where did he hear that phrase?  From me.   I made it up some time ago and I think I say it in about the same tone of voice to my husband when I’ve been going non-stop for too long.   I’ll say, I would just like to have a sit on my butt day and do nothing.”   As parents of young children, especially when one needs lots of help, weekends aren’t really days off and weekdays can be just as busy.   I never realized my son had paid attention to the phrase when I said it—or that I’d even said it in front of him.   It’s my version of “couch potato”.   I don’t watch television much but I’m excellent at sitting around and doing nothing important if I get the chance to have a day off.

The Big Boy Update:  My son told me tonight he wanted new books.  I could tell he wasn’t tired even though it was past bedtime.   I told him to hold on and I’d go get him a book.   I came back with a large paperback book and met him up in his bunk.   When I told him this had been my book when I was younger I got one of those, “ugh, this is going to be boring” sighs from him.   I told him this was a comic book and I knew he liked cartoons.   It was about a boy named Calvin and his stuffed tiger named Hobbes who came alive with his imagination.   I read the first few pages to him, explaining what a transmogrifier was (a cardboard box) and how it changed Calvin and Hobbes into anything their imagination came up with.   He was hooked in three pages.   I haven’t heard a sound from him since I left the room.   I loved the Calvin & Hobbes books when I was younger.  

The Tiny Girl Chronicles:  My daughter and husband went to a Y-Guides event today to see a women’s basketball game.   My husband wasn’t sure she would like it at all since it’s largely a seeing thing.   He was surprised to find her loving it.   There was the popcorn and the cheering and then the chants they were doing to cheer on the team.   She wants to go back and see more games.

All Together Again

My husband is back in town after skiing with my best friend and her family and some other friends.  He’s been gone a week and before that I was gone for five days with my best friend and some girlfriends in Cancun.   We’re remembering what it’s like to have two parents in the house to do all the things that need to be done in a day.   It’s nice to be back together again.

My children were very excited to see their father.  My son was particularly excited because he wanted to play Fortnite together and to have dad help him level up on the new “season” of Fortnite that was released while he was out of town.

It’s interesting when you’re solo parenting how things change in your mind.   You’d think things get harder because you’re the only parent on the job the entire day but it turns out to be the opposite.  You get in the grove of things, expecting to be the only one the children can come to with things they need, want or need refereed.   It’s almost easier in a way.   I can’t explain it, but I’m a calmer parent when I know there’s no one there to back me up and I have to go it alone.

The children have been quite good for both of us.  Mornings went smoothly and the evening routine wasn’t more challenging than it would have normally been.   Everyone in our family does well when someone leaves; we don’t bemoan that one parent or child is missing and how we’re missing them so badly, but we do talk about how we’re excited for dad to come home in two days.  

My son reminded me this morning that dad was coming home today.   He was happy about it, but not concerned.   It’s nice that they don’t have separation anxiety over it.   For me, I messaged my husband the day after he left and said I sort of missed knowing he was in the basement, playing Fortnite or watching a movie (his end of day routine) while I lay in bed doing things on my iPad (my end of day routine).   He said he’d felt similar when I was out of town as well.

I wouldn’t want to single parent as a full-time thing; my husband does a good job of being both a husband and a father.   I’m glad he’s back, down in the basement as I write this post, loading up Fortnite and checking out all the updates since he left.

The Big Boy Tiny Girl Twister Adventure:  My daughter won a blindfolded Twister game at the Braille Challenge.   It’s played like regular Twister but the colored circles are marked with foam shapes on the mat and includes blindfolds.   When the color/shape is called out, you have to feel around to find where your hand or foot has to go.   It’s fun like traditional Twister, but it gives us a little window into what life is like for my daughter.   The only thing she couldn’t do was spin the spinner because you have to see what’s printed on the cardboard to call out what the spinner has landed on.   I labeled it tonight with Left Foot, Right Hand, etc. in the corners, added thin strip tape to separate all of the sections of the circle and then we put tactile stickers on each color so “Red Circle” was a raised circle sticker and Blue Diamond was a raised diamond sticker.   My children were both really interested in playing, both with and against people as well as just playing by themselves.   As a sighted person, playing the game with a blindfold on was both disorienting and challenging.   “Red Circle” means “Circle” and red has no bearing.   I realized once I started playing that my daughter uses visual words a lot of the time because we do, even though they mean nothing to her.

Adderall

It would appear I forgot to write a blog post last night.   Every so often I get in bed with a niggling thought in the back of my mind that I’ve forgotten something.  Usually I don’t have forget the blog post because I have something I want to write about.   But every so often this happens.   And typically it’s on days I have something to write about but eleventy twelve things need to get done and I just forget.

What I was going to write about last night was our recent experience with my son and putting him on medication for some ADHD behaviors he has.   I don’t like to say he, “has ADHD” because I just don’t like labeling him that way.   He has inattentiveness and hyperactivity though.   I had it as a child myself.   He has a hard time staying on task because his processing speed is slower than his brain is moving through information.   He has anxiety as a result, because he’s not able to do the things he knows he’s supposed to be doing (work at school) and is doing things he shouldn’t be (distracting and interrupting other students).

We’ve done just about everything we could to avoid medication.   We’ve worked with a play therapist, an integrative occupational therapist, done Theraplay, had him do neural feedback sessions, brought in a nutritionist who specializes the connection of ADHD and food.   We’ve had him formally evaluated by a psychiatrist to get a full IQ rating and all aspects of his ability to learn (which is where we got the ADHD details on him).  We’ve been working with his teachers for two years on how to best prepare him for school and they have done countless things to try and make his learning environment best suited to his needs.

But it wasn’t enough.   And my son was getting dejected by it all.   He said to me one day, “why do I need so much help?”   We didn’t have him in extra curricular activities because he was busy seeing too many specialists.   The day my son said that to me my husband and I realized we needed to think about how all the “help” was really helping him, or if it was hurting his self-image and morale more than it was helping.

Then there was the meeting called with my son’s teachers, special needs teacher and the head of school.  My son had had a very bad day and had said some alarming things because his anger wasn’t in check.  We address that quickly but moved into how we all had tried our best for him but it wasn’t helping enough.

After that meeting my husband and I both drove off in our separate cars and got on the phone.   We both had independently decided we needed to try medication, that we’d put it off for as long as was reasonable, but if it helped him when everything else was failing, we were doing him a disservice by not trying it.

I got in quickly with another psychiatrist and had my son’s evaluations sent over in advance.   He agreed it looked like medication might make a difference—both significantly and immediately.   But there was a catch: not every medication works for every child, even when the diagnosis is similar.   So we’d try the first one and if that didn’t work, go to the second one.

We tried a variant of Ritalin first, with very poor results.  Over the weekend when we gave it to him, my son turned into a more extreme version of himself.   He was both mentally and physically out of control and he couldn’t control his emotions at all, resulting in high levels of anger or sadness.

We next tried Adderall and per instructions, gave him a half pill for the first day.   I was out of  town at the time but my husband said it looked like the same result as the first medicine.  I was with my best friend at the time and one of her daughters takes Adderall and she had some advice: sometime a higher dose is what’s really needed.

When I got home and my husband left to go skiing I gave my son a full dose and was surprised with the result.   My son was interested in doing things for long periods.   He was engaged and enjoyed what he was doing.   Mentally, he was calm.

So I gave him an Adderall and sent him to school on Monday with a message to his teachers about the new medication.  The week was interesting.   There were some things that happened on Monday that put the medication in question, but his teachers and therapist said to keep with it for a few days and the good news is, it’s working.

We’ve been getting a detailed report from his teachers each day on how his day has gone.   My son has completed more work in the past week than he’s ever done before.   And my son suddenly loves school.   He told me school was his favorite thing on Thursday night and he even brought home work one day because he wanted to keep working on something and ran out of time.

There is one catch though: when the Adderall wears off (it’s about six hours and has trailed off mostly by pickup) my son is emotionally on edge and can very easily become highly disregulated.  One afternoon he threw a tantrum for over an hour—a tantrum the likes of which I haven’t seen before.

We’re working on ways to combat that aspect though, because the benefits he’s getting from the medication at school are worth it.   Maddie, my best friend’s daughter, said when she gets home from school and her Adderall has worn off, she is usually very hungry.  Some people have a loss of appetite on the medication but so far, my son has been eating his entire meal and is hungry for more when he gets home.  

So we’ll see how it continues to go, but this was a good week.   And my son is proud of what he’s doing at school.   He’s excited about it even.   As much as my husband and I don’t want to turn to medication to help him, I think it was a good choice at this point.

The Big Boy Update: My son came home with a full backpack.   He had notebooks and papers and book reports he’d completed over the first part of the school year.   He wanted to show it all to me, laying it out on the counter in the kitchen.   He was proud of all the work he’d accomplished this year.

The Tiny Girl Chronicles:  My daughter and I made flash cards last night for the braille contractions she knew as well as for the ones I knew.   She was typing out all the “dot five” contractions she could remember.   My favorite was “dot five Lloyd”.  I said, “I think you mean “dot five Lord”.  They use the contraction at school but in a non-religious way so I think she thought it was someone’s name all along instead of meaning the Lord.