Help!

Today something happened that made me very proud of my daughter.   My husband, daughter, son and I had just returned from tumbling to find our neighbors outside with their bounce house inflated.   I went inside to put things away while my son and husband stayed outside, my husband saying he was heading over to talk to our neighbor about something.

My daughter was somewhere in the house when I went to the closet and got up on the bench in front of the mirror to get something.   The bench is narrow and I suppose I’m clumsy and I faltered and ended up falling backwards into the bathroom and onto the tile floor.   I had grabbed at the side of the shelving to stop myself and had gotten a friction cut on my thumb.  I was okay, but at the time it frightened me so I called out, “help!  Can someone come help?”

My daughter came running into the bathroom.   I told her to call dad on Alexa.   I was assessing the damage while she tried not once, but three times to call her father.   Alexa tends to be picky about “cell” number versus “mobile” number versus ‘iPhone” number and neither she nor I could remember which category dad’s phone number had been listed under.

She got through to him and said, “dad, you need to come, mom’s hurt.”   I heard my husband say, “I’ve got to go” to the neighbor and the next thing I knew, he was in the house.   My daughter wanted to know if I needed and ice pack and my son came in to give me a hug.

Both my husband and I told my daughter how proud we were that she had rushed to the rescue.   She said, “well, I only know how to call with Alexa.”   We told her that was the only thing that counted.

The Big Boy Update:  My son is doing very well with all things tumbling.   Today he did a roundoff backflip flawlessly.   Typically you do a roundoff back handspring and then a back tuck, but he didn’t need the extra momentum from the backhand spring so his instructor said to go straight ahead with the tuck.   He sent a slow motion video of it to me after class.  It looks pretty cool.

The Tiny Girl Chronicles:  We were talking about our favorite places to eat the other day.   My daughter thought about it and said, “my favorite place to eat is the fair.”  She’s in good timing as the state fair arrives in two weeks.   Our whole family loves the fair.

Pumpkins and Prizes

I was away most of the day at a board retreat.   We didn’t really retreat anywhere, we just went to the multipurpose room at my son’s school for an overly long meeting.   We talked about lots of things, including strategic directions of the school for the coming years as well as the diversity initiatives for the school.   Exciting stuff—if you find that knd of thing exciting.   It’s a nice group of people on the board and I enjoy working with them.   Some of the day was serious but we managed to laugh a good bit as we did some of the role playing exercises with the consultants brought in to address diversity.

After the retreat we had planned to attend an annual event for visually impaired children and their families called, “Pumpkins and Prizes”.  My daughter likes this event because she sees people she knows there and all the activities are designed with low vision children in mind.   Couple that with the location being at a local gymnastics gym and it was hard to go wrong.

My son came with us and was one of a few sighted children in attendance.   I had to remind him several times that he was moving very quickly through the space and that he needed to be extra aware of the other children because most of them wouldn’t be able to see him.   He took what I told him seriously and was careful. albeit energetic the rest of the time.  The gym was set up with some obstacle courses, a trampoline, a foam pit with a climbing rope and other physical activities which my son was over-qualified and over-skilled to do.  He was told backflips weren’t okay on the trampoline and since they didn’t know his background or training, that made sense.  But he wasn’t bored; he enjoyed all the activities and spent some time playing catch with another low vision child using a rubbery pumpkin.

My daughter saw her VI teacher from last year, who had to leave in the middle of the school year due to health reasons.   We didn’t know what had happened to her and so we were all happy to see her and find out she was doing well.   My daughter was particularly happy to catch up with her, telling her about what she was doing in school now.

It was a bit of a challenge getting the children out of the foam pit when it was time to go.   As a child I loved the foam pit and I can remember the magic it held for me.   As an adult, it’s an entirely different story—it’s hard to move around in and get out of.   Maybe it’s easier to float on top as a child, I don’t know, but I’m glad to stand on the side and watch them have all the fun.

The Big Boy Update:  My son pronounces the word ‘mine’ as ‘my-ng’ with a hard ‘g’.   We’ve told him many times the correct pronunciation, not telling him he has to pronounce it correctly, more letting him know he’s not pronouncing it how it’s spelled.   He informed me the other day that he knew exactly how it was pronounced, but he didn’t like that way and he was going to keep using his version because he liked it better.

The Tiny Girl Chronicles:  We were sitting down to our dinner tonight when I overheard my daughter say to her father, “back in the old days, a long time ago, when I was three…"

Brain Sickness

My son has had his ups and downs over the past three years in school.   If he grew up when I did, he would be called, “hyperactive”.   That’s what I was called.   I see in him a lot of the behaviors I had when I was young.   He never runs out of energy and has a hard time settling down to get work done. He’s also disgraced mentally, which makes getting started on work an added challenge.   Then, to add to the pile of challenges he has, he has anxiety about doing the work.

We had him tested over the summer.   When I was a child I was tested too.  The results came back and I was performing above grade, had the capacity and intelligence to learn and in fact I was learning, only I was a challenge to deal with in the classroom.   Or at least that’s how I remember it.  My parents would know more.  My memory is only from a child’s perspective.   Apparently I knew everything that was going on, it just looked like I wasn’t paying attention.

But as far as starting and completing work, I don’t remember having any problems in that area.   When we say down with the child psychiatrist to review the results, she said, “he’s a very bright little guy.”  And while Intelligence Quotient numbers aren’t solidified until a child is older, my son ranked in the very superior range overall.   All the testing areas were quite high with one exception—processing speed.

This factors into the anxiety component.   My son doesn’t want to get things wrong, have corrections, make mistakes.   This can cause him to have trouble even starting to get work done and focus.   His mind feels like it’s being attacked by warriors, soldiers, bad guys if you will.   When that happens, he’s lost, he told me.  

He’s been working on it though.  He figured out how to put up a wall to battle the attackers and then was able to put a figurative “roof” up as well to keep the anxiety from winning.   But it doesn’t always work.

He was doing well at the beginning of the school year, glad to be a second year in his class and an upperclassman to the first years.  And then something happened, but we don’t know what it was.   It was a big change.   My son was barely able to get work done at all.   One day this week he spent a half-hour drawing on his eraser.   And he was complaining about feeling nauseated.

His stomach hurt when it was time to go to school, when we talked about school, when he was in school during work cycle, but not during playground time.   We all agreed it was anxiety.   I picked up my son on Tuesday to go to his integrative therapist and he told me how he was sick and I’d better stay away from him so I didn’t catch it.

I told him I didn’t think he was contagious because I thought what was making him feel sick was in his brain, not his body.   He thought about it and said that yes, what he had was, “brain sickness”.   When we got to Liz’s office we told her about his “brain sickness” and how it was making him feel so badly.

Liz had me stay in session with him and I we talked through what was happening.  He said (and showed on his body) how the sickness was in his brain, it came around to his mouth (but didn’t get stuck there) and then went into his stomach, where it was causing him to feel sick.

Through the hour I watched Liz talk him through what was happening and help him come up with a plan, that we turned into a contract, that would help him.   This combined two things: a means to get him to want to work at school, despite being afraid of not getting things right, and a reward system to get “freedoms” he wanted such as screen time, a second dessert, allowance and one on one time with a parent.

We called the contract, “Freedom with Responsibility” after a Montessori tenant.  If my son met a certain number of the items on the list, he would get to select a freedom.   But he had to be responsible first.   Some of the items are easy, and some are more challenging.   Working at school was one he is required to do each day if he wanted to gain a freedom.

So far, so good.  He’s been able to get back to work at school and has been proud of what he’s doing. I also told my son we could give him a Tums before school—that dad takes them too—and they help with acid in your stomach, which is what gets produced in excess when you’re under stress or having anxiety.

My son has been happy about things every since Tuesday.   He’s earned screen time, although he hasn’t used it like I thought he would have.   He’s been more interested in playing outside with his friends after school, which is definitely preferable.

The Big Boy Tiny Girl Six Pack Discussion:  At dinner tonight we were talking about moving a heavy desk out of a room that has a door that’s too small to fit the desk through without lifting and rotating it.  My son said he could help because he was strong and he had a six pack.  My daughter piped up, saying, “no you don’t, you have a four-and-a-half pack.”  Then she asked, “Dad, how much of a pack do you have?”  My husband explained that currently he only had a one pack.  My son said, “well, Papa has a zero pack because he likes to eat everything."

Unsleepy Drawings

My son used to hate drawing, he didn’t want to color with crayons—ever—and he didn’t like to write, at all.   For the first time though, I think he’s starting to like drawing and coming up with things to draw.  

My son couldn’t sleep last night.   My husband took him into the bonus room where for forty-five minutes, my son drew things.   And they were pretty good things, considering he didn’t like drawing at all just a short time ago.

The first picture is of sports my son is interested in.   See if you can guess them all:



This second photo is my children in the back seat of the Tesla Model S (note my daughter who is wearing glasses) with dad driving them to McDonalds.   The lower half os of my son on the electric scooter my daughter got for raising the most money (#1).



The Big Boy Update:  I got my son a weighted blanket.   It’s five pounds with small glass beads in a matrix inside.   Some children like the feel of weight on them and when my son is upset, he likes to hide.   So I thought I’d give it a try.   He was very interested in it when it came in the mail today.   Tonight he’s underneath it, probably sweating.   Maybe I should go check on him after I finish this post…

The Tiny Girl Chronicles:  My husband put my son back to bed the other night after he did the drawing above.   As he was walking out the door my daughter suddenly jumped up out of bet and said, “wait for me”.   Then she must have woken up more because she said, “daddy, why are you here?"

May You Please?

Children are learning English as they grow.   Some of the best learning they do is by making mistakes, such as using the wrong tense of a word in a sentence.   We usually say something like, “you can say <insert correct word>”.   They don’t take it as corrections so much as information on what words to use when.  

Sometimes though, children get stuck on a particular phrase or word and don’t want to make a chance.   For instance, when I was little I though you packed your clothes for travel in a, “soup case”.   I was not going to change how I said the word when my other told me, because I though it was silly, who packed suits to go on a trip?  

Eventually I came around as I got older.   My son has a phrase he uses when he wants something.   He’ll might say, “may you please get me my water bottle?”  We’ve suggested he could use ‘would’ or ‘could’ instead of ‘may’.   But not unlike I was at that age, he likes the way he says it and is sticking to it.

The Big Boy Update:  My son asked me the other day, “Mom, do you know the Marianas Trench?”  I said I did, why did he ask?   He had lots of questions about the depths of the ocean and the continental plates.   I really don’t think I was learning about this when I was in second grade.

The Tiny Girl Chronicles:  I came out on the front porch to call my children in for bath and bedtime routine.   Both children were in the tree in the front yard.   My daughter called out from the top limbs, “I’m afraid to say I’m going to have to live up here forever.”   She was not at all stuck.   She said she wanted to sleep in the tree.

I Wish I Was a Dead End

My children are training for a mile run (race?) with Uncle Jonathan and Margaret.   On Tuesdays we head in their direction and meet at an elementary school field.   The children do warm up exercises and run a few laps around the grass perimeter of the soccer field.   This week after everyone was warmed up, we all headed into the woods on a narrow, overgrown path which opened out into a  minimally maintained gravel path.

After receiving instructions from the coaches, the children, some with parents beside them, ran two half-mile laps through the wooded path.  Margaret and I headed off to a wooden bridge to direct runners as they approached the end of the first lap.

While Margaret and I waited for the runners, we talked about bug and spider bites, running and what we were going to do for dinner afterwards.   Since sushi was a favorite of our entire group, we picked a restaurant, having covered Mexican food as the last practice.

My son was intent on not running or even participating based on his comments on the ride over, but once he got warmed up and had met some other boys to play with he was more apt to be disappointed in the practice being over than he initially was about running.   My son is fast when he starts running. He doesn’t pace at all though, so he’s only fast in spurts.   But he doesn’t give up.   He had so much energy from earlier in the day he ran a third lap, making for a mile-and-a-half total run.

My husband ran with my daughter, holding her hand.   She had wanted only Margaret at the beginning of the session but when Margaret and I went off to guide runners, she took her father as a happy second option.

Once practice was over we went to the restaurant only to find the entrance partially blocked by what appeared to be a crime scene at a convenience store with yellow tape roping off a large area and police cars covering entrances and exits.   My son saw the action and determined someone must have been murdered and the police hadn’t been able to find the murderer.   When we found Margaret and Uncle Jonathan it turned out someone had been shot earlier.   But since my son didn’t bring it back up, we neglected to tell him about the confirmed violence.

The entrance to the restaurant was preceded with a spouting fountain.   My daughter, who never tires of throwing coins into small, manmade bodies of water, asked for some pennies.   I handed her a few coins and asked my son if he wanted to make a wish too.

As I saw my daughter throw her penny in, I heard her say, “I wish I was a dead end.”   I asked her to repeat what she’d said, “I said I wished I was a genii”.   My son’s wish was somewhat less positive, although in thinking about it, far more profound.   He had had a very difficult day at school followed by an hour with his integrative therapist and me working with him on creating a contract, which for his teachers and us would hopefully help him work better at school and get some freedoms (or rewards) he wanted at home.  As I saw him flip the coin into the water I heard him say, “I wish I was happy.”

Hearing him say that made me sad.   I asked him if he wanted to throw another coin in, handing him a nickel and telling him this coin was worth five wishes.   I asked him if he was unhappy and he nodded yes.   I said maybe he could wish for some happier things with the five wishes.   As he threw the coin over the top of the fountain he started listing off his wishes.  Some of them were super hero related, but the last one was the most interesting.  He said, “and I’d like to have a great education.”

The Big Boy Update:  After dinner my son and I rode home together while my daughter and husband rode in the other car.   I needed to stop at the drug store to pick up a prescription for my daughter.  As we got back in the car to head home, my son told me, “when I was little, I thought you you called this the ‘rug store’”.

The Tiny Girl Chronicles:  My daughter has another UTI.   This is the fifth since April, so now we’re going to a pediatric urologist to see if there’s more going on that we should know about or can address.  She’s not overly upset about the bladder infection, but she was very firm about no one knowing about it.   I told her it was okay, that girls got bladder infections sometimes.   She asked if boys did too and I told her it was much less common.   “So what do boys get then?” she asked.   I said boys sometimes had prostate problems when they got older.   That was a fun one to explain.

The Fun Run, By My Daughter

My daughter came home with some more writing work today.   Here’s what her school’s “Fun Run” Boosterthon fundraiser was like from her perspective:




The Big Boy Update: My son and I were eating breakfast together the other morning when he asked me, “Mom, what would happen if they had to cancel leap year?”   We had a conversation about how long it took our planet to do a full revolution around the sun and why every four years we added a day to the calendar to account for the partial day we needed to get back to the same starting point.

The Tiny Girl Chronicles: On the way home from school today my daughter asked me if she could please have a sleep over at her cousin, Olivia’s, house.   I told her Olivia was off at college right now but I’d let Uncle Dale and Aunt Rebecca know she wanted to come see them when Olivia was home.

Lego Cleanup for Screen Points

We have a lot of Legos at our house.   My husband is a big fan of Legos along with my son.   I grew up with Legos but would probably come in third place, behind my husband and son, on the Lego Enthusiasm scale.   Lego enthusiasm can be directly correlated with a desire to purchase more Lego sets.   This is one of those skills my husband excels at.   And having lots of Lego sets requires finding locations to store them after you’ve put them together.

I won't go into the discussions we’ve had over which models should be kept in their completed form, which should be taken down and stored as a set and which, after a period of post-assembly enjoyment, should be dismantled and added to the general collection of pieces.   We also don’t need to go into the secondary discussion about which model should be displayed in the house—filling the dining room table for months—with no foreseeable plan for relocation and storage.

For the most part we have a harmonious relationship with Legos in our house, excepting when they’re left out and get stepped on with bare feet.   But there does need to be some iterative cleanup over time.    The “general use” Legos are stacked in a corner in six multi-drawer containers, sorted by color, wheels, and people.   Over time my son and his friends make models using the pieces.   They’re getting more creative as they get older with what they make, but in the end, they don’t break down the pieces and re-sort them back into their respective drawers.   That part’s not nearly as fun.

I put a plastic bin on the top of the drawers for their completed or partially completed projects.   Over time the bin gets full.   They never seem to go back to the items in the bin to reuse them, they pull from the drawers to start over.   I’ve requested that sorting happen from time to time, but the job only gets partially done.

My husband and I have a list of things we’re working on getting done at the house and, “figure out what to do with all the Legos” was on my husband’s list.   This afternoon he started in on dismantling the Star Wars Star Destroyer and followed up with breaking down the White House, storing those models back in their boxes, destined for the attic.

I suggested we could have a family activity to sort the general use Legos.  At this point the bin had overflowed beyond the boundaries of the corner of the room in which they were meant to be contained.   My children could get “points” they could spend later for screen time if they helped and didn’t get distracted with all the pieces, building things instead of breaking them down.

Everyone agreed and after dinner we convened together on the floor of the bonus room.  I had gone through the piles and what was in the overage bin and pulled out all the larger creations, setting them aside for my daughter.   She has very little vision at this point and can’t tell colors, but she would be able to separate the larger creations into pieces.

We had a fun time doing it.   My daughter really liked her job, saying, “I love my job.”   My son was harder to keep on task, but he helped and got a good understanding of how to systematically sort and then store the pieces.  And they were happy about it too, because they got three points each towards future screen time.

And for me?  The best part is that heaping pile of Legos in the corner is now tidy and organized.   That’s the part I like the best.

The Big Boy Update:  My in-laws watched our children last night while my husband and I went to my son’s back to school adult social.   While we were out, Nana and Papa went around the block with the children on their scooters.   My son was well out ahead when Papa asked him didn’t he want to wait for his sister?   He replied, “Reese is the cutest in the world…but I have to be first.”

The Tiny Girl Chronicles:  We were outside late afternoon today when we had one of those impromptu meetings of adults while the children buzzed about us.   I talked to my dentist neighbor about dentist things, we were joined by other neighbor and asked how their son was doing in college.  Then my best friend’s husband and one of his daughters came by on their scooters and a bit later the conversation turned OBGYN related (as he’s an OBGYN) and someone said something involving, “IUD” in it.  My daughter, who was near us climbing a tree, immediately shouted out, “I had an IUD but mine expired.”   All the adults couldn’t help but laugh.   My husband explained that my daughter’s Ident-a-kid ID had expired two days ago and he had told her about it.

Banknotes Discrimination?

There is so much in today’s society that has been modified or is required to accommodate those with a disability.   Until I had a blind child I was blind, so to speak, of so many things that will help her be more independent throughout her life.  

For instance, the chirping sound at crosswalks to indicate when it’s safe to walk.   The bright yellow markings on curbs—the easiest color for someone with a vision impairment as well as the bumpy markings at the start of a crossing location to mark where to cross.   Not to mention all the braille in more places than I’d ever realized before.   And those are just a few that jump to the top of my mind as I write this.  

One thing that’s been a challenge is money for a blind person.   Coins are discernible by size and shape for US currency.   But what about banknotes?   The newly designed US bills, which are an upgrade from a counterfeiting standpoint in comparison to the old versions, are all the same shape and size when you hold them in your hand.   If you can’t see them, you don’t know if you have a one dollar bill or a hundred.  

In 2008, US bills were ruled to be discriminatory, but for now, how does a blind person ensure they have the right bills to pay someone, and how do they confirm they have the correct change when paying for something without a trusted second party’s help?

There are folding schemes commonly used with ones being flat, fives folded horizontally, tens folded vertically and twenties folded both horizontally and vertically.   Alternately, a small braille embosser tool could be used to impress dots into the paper bills at certain locations to mark denomination.   Other countries have addressed this issue in the currency itself, with Canada having raised markings on bills and China having tactile shapes in different locations on different denominations.   The Euro currency is different sizes for each denomination.

Enter the smart phone and the staggering array of apps that help do nearly anything you can imagine. After reading some supplementary materials from my latest course assignment, I went to look for an app that would help with identifying currency using your phone’s camera.

The app was free and after opening it the first time and hearing the verbal description of what it did, I was left with what looked like the camera app on my phone.   I opened my wallet and pulled out the bills I had.   I got them barely in range of the camera when it shouted out, “TWENTY”.   I put the stack down on the desk and began to flip through the bills, looking for a smaller denomination.

As I was moving the money around, even with my hand partially blocking the view of the bills, the app continued to call out denominations.   I had just spotted a ten when the app, seeing the edge of the bill, called out, “TEN”.   I started to laugh.   I spread the bills around on the desk and moved the phone over them while it called out denomination after denomination with no lag time in calculating what was visible in frame.  I turned bills over and the result was the same.  

This free app was more than I would have expected.   It was simple.  It was easy.  It was fast.   It made “discriminatory currency” almost a non-issue.

My daughter likes to pay the music teacher or the sitter.   Yesterday afternoon when she came home from school I called her and Edna in and told my daughter I wondered if she could pay Edna with the money I had.   I gave her the stack of bills and told her how much she needed to collect to pay Edna (who cleans our house).   She figured out the app in about ten seconds and had found the right amount to pay Edna in less than a minute.  Edna and I just watched and marveled at both the app and my daughter using it.

My daughter wasn’t done though.   She wanted to sort all the bills into denominational categories.   (It’s a good thing I’d just been to the bank and had extra bills.)  She was happily sorting when she realized she didn’t know what a particular pile was that she’d made.   But she figured out she could just scan the top of the pile again to find out.

We’re going digital a lot with paying people, for instance, our baby sitter we pay through Venmo now via direct payment through an app on the phone.  But banknotes aren’t going away just yet.   I think I’ll have my daughter use the app when we need to pay someone in cash in the future.   She enjoyed knowing about what money she was holding.  Previously she’s just had to hand over papers she knew little about.

The Big Boy Update:  My son and I went to breakfast together today.   We were talking about how things were going now that hurricane Florence had passed.   He said to me, “last week when I was watching, ‘Tracking Florence’ aka ‘The Weather Channel’”.  He said it so matter of factly, explaining how it was the show on the station and then all the things he’d learned about Florence.  The boats floating by people’s houses is exciting to him and looks fun, but we talked about how it wasn’t fun for the people who’s houses were under water.

The Tiny Girl Chronicles:   My daughter has been singing a song a lot lately.   The first line (as she sings it) is: “My country rid of thee”.  

Contracted Spelling

I vacillate back and forth between feeling lost and thinking I’m on top of things with the Contracted Braille class I’m taking.   It’s a much longer course than the initial, Uncontracted Braille course with a lot more in the way of learning how to read braille that I’d actually encounter.   For instance, after working through the past week of work, including instructions for teachers/parents from what my daughter’s done at school as well as her homework, I thought I had things.

Then, today I got back into the next section of the course and I went back to feeling lost.  There are single characters that represent a word, like ‘w’ stands for ‘will’ when it’s standing alone, but there are also common letter groups that have a specific braille symbol like ‘ch’ or ‘th’.   Those can be at the start, middle or end of words.   And that’s throwing me off.   I’m not thinking in letter groups when I type or read words, I’m thinking in syllables, so I’m missing things both in reading and writing braille.  It’s confusing as hell.

My daughter’s VI teacher said she wants to work on spelling throughout elementary school with my daughter because blind children are notoriously bad at spelling.   I didn’t get a good sense of why until recently as I got deeper into the world of contracted braille.   For instance, this is how my daughter would write a sentence:  “I’m j ab full, b I’d l a ll m tea ø  c®fee af my pie.”

There are a lot missing letters word wise in that sentence which we would type as: “I’m just about full, but I’d like a little more tea or core after my pie.”

My daughter enjoys spelling though.  She loves to sound out words and asks how to spell things all the time.   If an adult isn’t available to tell her, she’ll ask Alexa.   And while my daughter is working on spelling, I’m learning how to not spell things correctly via the collection of whole and part-word contractions she’s learning in addition as she’s taught braille.

The Big Boy Update:  My son had a nightmare last night in the middle of the night.   He made such a clatter coming downstairs that he woke his sister up, which almost never happens.   He climbed into the bed and his sister followed, collapsing into a ball on the floor on the side of my bed.   I asked my son if he was okay and if he had a nightmare.   He said, “my brain got full and I forgot what to do.”   I waited about two minutes and then the three of us walked back up to their bedroom, holding hands in a chain as we went.

The Tiny Girl Chronicles:  My daughter came home from school today and informed me, “when I grow up I’m going to get a cat and name him Cheeseburger.”

A Picture of Breakfast

The Big Boy Tiny Girl Making Their Own Breakfast Morning:
This morning my husband had to leave early for service on his car.   I was doing my usual snoozing the phone alarm and rolling over, trying to figure out how many minutes more I had to sleep before I couldn’t put off getting up any longer when I hear clatter and chopping sounds in the kitchen.

My daughter had already come in to ask what was for breakfast and then did her usual, “no” to everything I suggested, so I told her to figure out something on her own.  I got up to find my son and daughter getting their own breakfast ready.   So far, my son had gotten carrots and chopped them rather finely.   He said I needed to cook them.

I said we could microwave them, but I’m not sure how they’d like them.   Next, my son explained, we needed mashed potatoes.  What?  I was so confused as to how breakfast was shaping up to be the sausages from the freezer, carrots and mashed potatoes…and then I saw the sausage box.

On the front was a picture of sausages beside some carrots and mashed potatoes.   My son was recreating the entire breakfast on the package.   I put the now microwaved carrots on their two plates, started warming up the sausages and then found some fingerling potatoes in the refrigerator from a recent dinner.  

I suggested we could warm up the potatoes, but it wouldn’t be exactly “mashed” versions.   Not a problem, my son said,  he had an idea that involved a fork.    After I’d heated the potatoes he did his best to mash them up.   He was stymied by the skin on them, but when I suggested he call them, “smashed potatoes” that seemed to be acceptable.

Oh, and wait, what about an egg?  He was getting out the frying pan, thinking scrambled eggs but we compromised on slicing up a hard boiled egg (conveniently featured on the box of the other type of sausage from the freezer.)

My son was so proud of his breakfast he wanted me to take a picture of it.   His sister was not as thrilled, asking mid-way through the preparations if she could just have pasta instead.

Thumb Improved

About eighteen months ago I started having trouble with my right thumb.   It was painful at the joint closest to the wrist, the CMC joint.   I wore a splint for a while and took some NSAIDs, which would help, but on the whole, the situation was slowly worsening in my thumb instead of improving.

It wasn’t presenting like an injury, mostly because there wasn’t an injury that caused it.   It was more like a general wearing out it seemed.   I had my chiropractor look at it and he pressed in the meaty part of the ball of my thumb, asking if that hurt and I almost punched him.   Yes, that hurt.   The thumb was hyper laxative, or had too much movement in the joint but nothing was wrong that was really fixable.

Over time it would get worse and then better.   For a while just using the thumb was a mess and I transitioned to typing on my phone with my left thumb and right index finger.   At about that time I was getting the second steroid injections into my cervical spine to hopefully help with the issues I was having there and I thought I’d ask something of the doctor.

If there was any steroid left in the syringe, could he put the remainder in my thumb?   Sure, he said.   My thumb did get a bit better, but it returned rather quickly to its prior state and now had a disconcerting clicking when I used it along with the pain.  

It was time to get that referral to the hand doctor my chiropractor had talked about, I decided.   I got in fairly quickly and after a manual exam and some x-rays he confirmed it was general degeneration.   The spacing in portions of the joint had been reduced, which was the clicking I was feeling as cartridge was wearing down.   I also had two osteophytes or bone spurs, one which had appeared reasonably recently and was noticeable from the outside.

I was already following his recommendations, but since I got some relief from the steroid injection, he said let’s try a second one.   As a forewarning, if you don’t want to hear about a needle, skip the next paragraph.

He had the nurse take my thumb and pull it outward, increasing the joint space before doing the injection.  He missed every nerve somehow as he put the needle close to an inch into my thumb, injected about 5cc’s of lidocaine and then 10cc’s of steroid.

And I marveled at what he was doing, because the other doctor, an expert in the spine, wasn’t a hand doctor.   And the other doctor didn’t get the steroid in the same place.   He said it would help some, which is why I got partial relief in that case, but he suspected this would help more.

It’s been two days now and my thumb is almost asymptomatic.   It barely hurts.   It was so worth it.   The injection should last for four months and I can go back for another one if needed.

The Big Boy Update:   My son was eating his dinner the other night when I asked him if he needed any catchup for his fries (which he historically used a lot of).   He said, “I don’t like catchup and fries together.   It’s like a bad combination for my taste buds.”

The Tiny Girl Chronicles:  My daughter ran in her boosterthon fun run today.   All the boosterthon staff knew her and said she was so much fun.   They would go around the class and down the hall and high five the students but since my daughter couldn’t see their hands she decided to have them say, “apple!” and she’d reply, “starfish!”  No one knew why, but it was their tradition.    My daughter did win the top fundraiser goal, something that she’s very proud of.   Our thanks to friends and family who helped support her in her race to raise money for her school.   My daughter wrote thank you notes in braille to everyone to thank them personally.   She and I had fun working on the notes together.

Patent Leather Shoes

I was texting my mother yesterday (or was it the day before) about some shoes she had.   We both agreed that while heels certainly looked nice on ladies, we didn’t prefer them.   I have some heels, and I do think I look nice in them, but my feet grow sullen and angry for sometimes days after I wear them for an evening.

My mother said on a recent trip she had worn tennis shoes or patent leather flats the whole time.   Something about that phrase, “patent leather” brought me back to my childhood when I read it.  

My mother would take me to the StrideRite store in the shopping mall that’s now been torn down and replaced with a larger and yet more sprawling multi-purpose mall.   I’m not sure how often we’d go to the shoe store because time runs slower when you’re a child.   For me, what seemed like my entire childhood probably wasn’t that long because feet grow fairly quickly when you’re a child.

At StrideRite you could get a stamp every time you bought a pair of shoes.   There wasn’t a computer tracking system that logged your purchases, so they did it some manual way.   Actually, I say it was a punch or stamp card but I don’t really know.   I was too busy picking out the shoes I wanted next.  

The thing was, after you bought twelve pair of shoes, you got the thirteenth pair free.    Every time my mother and I would go, we’d count how many more pairs until we got that coveted free pair.  I didn’t pay for the shoes as a child, but it was somehow exciting to be getting a whole two shoes and walk out of the store, bag in hand, paying absolutely nothing at all.  

It was at that StrideRite store that I was introduced to PatentLeather I would guess.   I don’t remember it specifically, but I do remember patent leather shoes.   Those black, little girl dressy shoes that are still popular today.   I was quite the tomboy, but in my patent leather shoes, I thought I looked refined and mature.  

My daughter, however, has other thoughts about dressy shoes.   She’s had multiple pair, mostly handed down from her neighbor and friend, Madison.   But she won’t wear them.   Doesn’t like them.  Says they’re uncomfortable.   It’s why most of our family photos and holiday pictures have my daughter in something more like sneakers than shoes that match her outfit.

The Big Boy Update:   Okay, one day after getting laced shoes for the first time, my son can tie them all by himself.   He was old enough (and determined enough) I suppose.   He has always good with knots and physical things so I’m not overly surprised.   I didn’t think he’d get it in one lesson and a half-day later though.   When I picked him up early from school they called him up to the office.   He came right away, and I know he had to put on his shoes because Montessori classrooms wear inside shoes or slippers when they’re in the classroom.

The Tiny Girl Chronicles:  My daughter will launch into song, singing, “out country tis of the, sweet land of liberty…” lately.   I think, but I can’t get out of her, that she’s been singing the song with her class at school.   She’s not so sure what some of the words mean so I’ve been explaining.   I’ve been asking Alexa to play versions of the song, but my daughter only wants to sing it herself, without accompaniment.

The Oven…Again

My daughter and the two next-door neighbor children wanted chocolate today.   I explained there would be no chocolate because it was almost lunch time.   They came back later with an ingenious plan: I would do a treasure hunt for them and at the end of the hunt they would find some chocolate.   Could I do a treasure hunt for them?  Pleeeeeeeeeeeease?

I told them to go ask their mother and if it was okay, we would do a treasure hunt but that there would be only one small chocolate at the end.   So they ran home and asked and got clearance from their mother   Then, to make the treasure a complete surprise, they discussed what chocolate they each wanted and could I put one Hershey’s Kiss and two mini Reese’s Peanut Butter Cups at the treasure location?

I said I would and made up about fifteen treasure step cards, “go look under the bed in the guest room,” “Go look inside the dryer”, “Look where the purple ball usually stays at night”—that kind of thing.  I wanted them to get some exercise so I put them up and down foors.   Which was nice except I had to go up and down the floors hiding the clues.  

I handed the first card to Madison and said she could read them, what with her brother not yet reading and my daughter not able to see the small print.   Madison needed some help with the wording, but I’d put in a little bit of information on some of the cards that only my daughter would know from a location standpoint, which gave her an edge.    But she did get annoyed at them because the other children would run off, faster than she could safely, to get the next card.   She asked them to wait for her, but they were just excited and exuberant.

I told my daughter the next time we did the treasure hunt I was going to create braille cards for the locations.   And she would be the only one who could read the cards.   That will give her an edge for sure.   A small but satisfying thing about learning braille is I can do these things without much more effort than writing out the locations in print.

When I was young I used to love the treasure hunt game.   My mother had a set of cards she’d written up location on and we’d play from time to time.   The same set of cards work many times because the order makes the hunt different each time.   My mother was pretty good with treasures, but I did have only one complaint.  She always seemed to put the treasure in the same place—the oven.

The Big Boy Update:  My son needed new shoes—badly, so after tricking class we went to target and picked out a pair of shoes with laces instead of velcro.   He put on the shoes with his pajamas before bed and I showed him how to tie the shoes.   He got the concept and moves, but he needed time to practice to get it.   I think he’ll have it by the end of the week—or three pair of shoes from now, depending on if he decides to just shove them on and off once he’s gotten them tied a few times.

The Tiny Girl Chronicles:  My daughter had her first Y-Guides meeting with her father and several other fathers and daughters from our neighborhood tonight.   She was shy but did know two of the children, as well as the tribe leader—my best friend’s husband.   My husband said it was tough for her.   The other girls were running around and playing together.   My daughter wanted to play too, but she couldn’t run with the other children so she asked her dad to.   This sounds a lot like school was at the start of the year.  She was anxious but now has lots of friends.  I hope Y-Guides turns out the same.

Thin Mints

My mother has a way of making chocolate last.   Each Christmas my in-laws send my parents a box of chocolates.   Weeks later my mother has told her how she and my father were still enjoying the chocolate, having a piece each for dessert after dinner.  

When I was a child I remember going to my mother’s office on the weekends or over holidays while she got work done.   Any time we had a vacation she’d go into work before returning the following Monday to do some catching up.   I always loved going to her office.  

She was in a big building on the campus of the college I’d eventually go to.   The building had a large rotunda in the middle.   I would make paper airplanes and go to the third floor, flying them down and seeing which model would fly the longest.  

I’d come back into her office, hungry and ask if there was anything to eat.   Sometimes they had food left over in the refrigerator from events they’d had the prior week, but often times the only thing to eat was Captain’s Crackers.   I learned to love those buttery crackers as a child and still eat them today.  

Barring food in the refrigerator, she would usher me back into her office, open a drawer in her credenza and pull out a thin, rectangular box of thin mints.   The disk-shaped peppermint sugar covered in chocolate that would melt in my mouth.   It was gone all too soon.   I could have easily eaten the whole box, but one was the limit.  

I don’t think I ever went to her office when she didn’t have a box of thin mints.   Today, in their home in the mountains, she keeps a bowl full of peppermint patties.   We’ve had to move the dish once my children discover it, because like me, they would happily eat them all.

The Big Boy Update:  My son wants to be two things for Halloween.   He’s already selected his costume, which I’ve ordered, but he wants to be something different for the neighborhood party before trick-or-treating.   I told him he’d have to make a second costume if he wanted to go that route.   He’s thinking about his options, going through the costume bin in their closet tonight and wearing a Spider Man costume he grew out of two years ago.  

The Tiny Girl Chronicles:  We went to lunch with my daughter’s braillest from last year today.   Mrs. Aagaard came home with us to illustrate a story my daughter and son wrote.   My daughter had typed it up in braille and we were ready to watch Mrs. Aagaard illustrate it with the Tactile Graphics Kit that makes raised patterns and lines on paper so a blind person can feel a drawing.   We had a nice afternoon together and I got a lot of good tips on learning braille as a bonus.

Contracted Confusion

The contracted braille course I’m taking is getting more complicated.   It’s not complex complicated in so much as there are simply a lot of ways you can make six dot combinations mean lots of things.   Sometimes my eyes feel like they’re figuratively “crossing” and everything just looks like a sea of dots on the screen or page.

I was doing well in the uncontracted braille course and was barreling forward because I wanted to get to the more interesting contracted braille in which I’d learn shortcuts and ultimately be able to read braille wherever I found it.   Knowing the alphabet, numbers, punctuation and associated rules was the totally of the first course, but things as simple as the ‘Men’ and ‘Women’ signs on bathrooms have contractions in them.   In the case of the bathroom signs, since I already knew what the word was, it was fairly easy to figure out, but to realistically read braille, I need to know it all.

Here’s an example.   In uncontracted braille the sentence: ‘You should receive your letter tomorrow afternoon.” looks like this:



It’s almost a 1-for-1 character translation with the only extra character being the first, which is the capital indicator.

But braille is long and takes up space.   You can’t reduce the type font because a blind person reads with their fingers and those little dots are already pretty small.   I’ve tried to even discern a few characters with my fingers and it’s hard.    Braille books are significantly larger than print books and so to reduce the overall space, contracted braille was born.

As my mother-in-law has told me, it’s not unlike shorthand with lots of shortcuts for words.   The same sentence above looks like this in contracted braille:



The capital indicator is at the beginning and the period is the last symbol.   You can tell there are seven words in the sentence from the spaces, but it’s not at all like the uncontracted spell-everything-out-letter-by-letter version.

There are a lot of contractions.   Some are stand-alone words and some are letter combinations that can be at the start of a word, but not in the middle or end.   Others can be found anywhere in the word.   It’s a little daunting, to say the least.

Today I caught up with my class homework and decided to do some practice work.   I took the my contraction reference sheets upstairs to my daughter’s brailler which is seated at a child-sized desk.   I moved it to an adult-sized table and started typing.   I typed for over an hour.   I used sheets and sheets of braille paper.

And several things happened:  first, I got more proficient at typing.  I was having to think less and less about what finger/key combinations each letter was.  Second, I started to remember some of the contractions I was either forgetting entirely or getting confused with other contractions.   I also started to remember what contractions there were.   For example, there’s a contraction for ‘it’ and ‘as’, but not ‘is’.

Tomorrow, Florence weather permitting, we’re going to lunch with my daughter’s braillest from last year.   I’m looking forward to hearing tips she has on how to keep all the contractions straight.   The last time we had lunch she had some very helpful advice.

The Big Boy Update:   We were out to dinner with Uncle Jonathan and Margaret the other night in a restaurant that had televisions showing football on them.   Anything on a screen my son is drawn to.   We don’t watch much television at home and never have football on.   As he was watching he saw a pass and said, sounding impressed, “he threw that football far.   Then the picture cut to the announcers.   My son turned to me and asked, “Is that the guy from Cosmos?”  I looked and the black man did look a little bit like Neil deGrasse Tyson.   I think my son was disappointed.  Cosmos is his favorite show.

The Tiny Girl Chronicles:  My daughter wanted to do some team braille writing this afternoon to help me with my braille, she said.   We ended up writing letters to her brother and father.   We’d each write a few sentences on a page, I would interline or write the print version of what we’d typed above the braille and she’d add a picture.   We put the letters in envelopes and gave them to my son and husband at dinner.   We worked on accuracy of our typing—she and I both rush and make a lot of mistakes.   Braille mistakes are erasable, but it’s not as easy as backspacing on a computer.   You have to press the raised dots back into the paper with a small wooden tool.   Or, if you’re my daughter, you just use your fingernail.

When I Was Young:  My father sent me an email today with a picture of me with the subject line of ‘Cute baby’.

Keyboard

I got a new keyboard for my Mac.   My daughter has been using my keyboard to practice typing on her iPad.   She needs a physical keyboard with keys she can feel so she can get positioned and find the keys as they relate to each other.   The apple keyboards are very friendly, waking up and connecting when the thing they’re paired to turns on.   This is great, unless you have two things you want the keyboard paired to.   The only way I found around this was to forget the pairing on my Mac and pair it to the iPad and vice versa as needed.  

My daughter needed a standard sized keyboard, not one iPad-sized, so she could get accustomed to the relative size of the keys as they would be on a laptop—which is what she’ll be using in school for touch typing.   So I got the updated version of the Mac bluetooth keyboard and handed down my existing keyboard to my daughter.    It’s fun to watch her type, although she’s more interested in speed than accuracy, so she’s not moving forward in the typing lessons as fast as she’d like.  

The new keyboard is slightly different in size and my accuracy is rather appalling.   It’ll take me a few days to adjust.  In the meantime, it’s taking me about a third as long to write this blog post as it normally would with the backspace key getting a rather heroic workout.

The Big Boy Update:  My son asked me the other day how police got paid.   He wanted to know if they got paid more if they put someone very bad in jail versus someone who had done something just a little bad.   Also, he asked if the police got to take the money the bad person had if they got them and put them in prison.   I explained what ‘salary’ was and how the city paid them and, of course, how we were very grateful there were people who wanted the dangerous job of keeping us safe as citizens.    A few hours later as I was waiting in line to pay for dinner, there were two police officers in front of me in line.   I told them what my son had suggested.   The one officer said he thought it was a great idea and hoped my son would take it to the city to get it implemented.  

The Tiny Girl Chronicles:  My daughter and I worked for several hours today on her thank you notes to family and friends who contributed to the Boosterthon fun run fundraiser for her school this year.   She wrote the notes in braille and drew a picture on each.   I interlined the braille with the corresponding text and added things to indicate what she had drawn.   We stamped, labeled and addressed the envelopes and then my daughter put a seal with sealing wax on each (the part that was most fun, she told me).   Afterwards as she was eating her dessert she said to me, “when I grow older, if I can see with both eyes, can I still read braille?”  I told her most definitely, that I could see with both eyes but I was also able to read braille.  And then a strange thing happened.   I had hope for her vision to return.   I haven’t had that feeling in a long time.   I don’t know what it was, maybe just the thought that she still believed her vision could return made the difference.   She never talks about her vision loss.   I didn’t know she still had hope either.

Library For The Blind

My daughter’s school was out today, cancelled far too early for the potential of hurricane Florence arriving in our area.   As of tonight, we have no rain and some mild wind while the hurricane approaches the coast, hours away with a path that will have our area likely getting some decent rain with winds, but nothing catastrophic.  There is already much devastation, but it’s relatively far away from us.

But school was out and I thought it would be a good time to take my daughter to the Library for the Blind and Physically Handicapped.   She’s been getting braille books and audio books from them, via mail, for a while, but since we happen to be fifteen minutes away from the state-wide library, a visit might be a nice thing.

We arrived at a quiet time and one of the directors said she’d be glad to take us on a tour while one of the staff pulled some books for my daughter.   We went to the racks in the back to see row upon row of audio books.  My daughter needed to touch everything to experience it and wanted to climb up the step ladder, pull out an audio book or two and ask me the titles.  

Then we went to the compact shelving, the kind that move and are all stacked against each other.   Each row has a big wheel on the ends you spin to move the shelf along a track to open up a space between so you can get to the books inside.   The wheel was exciting to my daughter, who wanted to go back multiple times to move the shelves back and forth.  

We found out there are over eleven thousand books checked in and out each week from the library, which has such mail volume it has its own zip code.   What surprised me though was hearing they have relatively few children they serve.   I knew there were more adult blind people than children, blindness onsetting for some late in life, but I didn’t suspect there would be so few children.

Next we saw the sound studio for audio book recording.   I’d never seen one of these before and it was unexpected.   Our guide opened what looked to be a large safe with a very heavy door.  Inside was a table, chair and complicated mic assembly.   There narrator sat inside the room (box?) and spoke the words in the book being recorded.   There was a window through which they could see the person doing the recording on the other side who could talk with them as needed through a mic.  

About that time, my daughter’s three new books arrived in a mail-returnable and reusable package—the same type as we’d received all her other books in in the past.   She thanked everyone and we headed to the car.   As we were getting in, she asked if she could start to read one of the books on the way home.   We had fun with her spelling words and asking me what some of them were, such as ‘stegosaurus’.   She also discovered some new contractions and figured them out with the context of the tactile pictures included on the page.

I told her we could come back any time she wanted new books, or we could mail back in the ones she’s had for a while so other children could enjoy them.

The Big Boy Tiny Girl Sleeping Bag Campout:  Several days ago we told the children we might have to sleep in the basement if Florence came directly towards us as was the predicted path at the time.   They haven’t forgotten though and have been excited about “camping out” in the basement.   They have a little concern about high winds and the possibility of windows breaking, but that most certainly won’t happen tonight, or at all.   Regardless though, they wanted to camp out.   We let them stay up late and put them in their sleeping bags on the sofas in the living room on the main floor.   They’re both excited about the incoming weather, not fully understanding the amount of destruction the hurricane will be bringing.

One Hundred Percent Awake

My son has said a few times recently, “I am one hundred percent awake.”   He’s been in the bed, full of energy, unable to go to sleep,   Tonight I told him he could bring his joke book into the basement and read while I wrote this blog post.  

As he was coming down the stairs, he told me he was going to find a good joke and I could put it in my blog.   I agreed that was a good idea.

Only now that I’m down here, I’m having a difficult time writing anything, due to the questions from my son.   He didn’t understand why a dog would be a bad dancer because it had two left feet, or why “hailing taxis” was a worse weather phenomenon than, “raining cats and dogs”.  

He’s a question machine, which is good because he’s interested and wants to learn, but it makes completing a sentence on the keyboard an exercise of refocusing more than once sometimes.

So tonight, for his update, he’s selected the content from his joke book…

The Big Boy Update:  When do truck drivers stop for a snack?    When they see a fork in the road.

The Tiny Girl Chronicles:  My daughter is out of school for the next two days due to impending Florence the hurricane.   Initially it looked like we’d be in very big trouble, but the storm has shifted, putting us in less potential peril than the predictions from three days ago.

Getting Up Early

My daughter and husband went to Detroit to see her retina surgeon, Dr. Trese, today.   They had a very early flight, requiring them to leave the house at 4:45AM.   As an adult, this is not exciting at all, but to my daughter, this was an adventure.

Last night she asked if she could set an alarm using the Amazon Echo in the children’s room.  We talked about what time would be good for her to get up, come downstairs and get her clothes and shoes on that had already been laid out for her.   She set the alarm and changed the volume to a lower setting, “because I don’t want to wake my brother up” she said.

Four o’clock didn’t come soon enough for her though as she came down at three to ask me if it was morning yet and was subsequently disappointed when I told her she had another hour to wait.   She wasn’t sleepy, she complained, but did manage to go back to sleep until her alarm went off.   She’s not been this excited for Christmas morning before.

She and my husband had an easy trip to Detroit today, getting back to enjoy rush hour traffic to meet her brother, Uncle Jonathan, Margaret and me for dinner.   She goes back in a month for a longer trip with an OR visit to find out more information.   To summarize what we know from today’s appointment:

Her vision has fractionally improved—possibly.   My husband and I aren’t sure.   But it does look most of the edema has resolved.   There doesn’t look to be additional pigmentation behind her retina and her pressure is within normal tolerances.   But her vision from this spring isn’t back, so there may be more in play, or it might be permanent damage.   That’s as yet unknown.

We asked about her right eye, which is totally blocked from vision with internal scar tissue that keeps regrowing.   They did a light test today and for the first time, my daughter didn’t even know he was shining the very bright light at her eye.   You can see a flashlight through your finger, this is a small membrane of tissue.   So that’s not good.   Will Dr. Trese address the right eye?  Possibly, although it might be pointless.   He wants to wait a bit to find out more with the left eye first.

The Big Boy Update Tiny Girl Bathroom Discussion:  In the back of the car on Monday my daughter asked her brother, “when you go to the bathroom do you hold your penis with your hand?”  He thought and said, “sometimes”.   And while this is a cute conversation between children, I wonder if my daughter even knows what a penis looks like and how she realized it might be something that needed holding for someone who stood up while they went to the bathroom.

All About Ice Cream

I’m letting my daughter write the blog post again tonight.   Her free writing in school sums up our family life far better than I could ever hope to capture it.

It’s clear my daughter is all about desserts, ice cream in particular.   Some explanation and words that are a bit tricky with her phonetic spelling:  I went to the grocery store yesterday and got some ice cream and other food the children were excited about.   Of the flavors, one had peanut butter cups in it, which I didn’t realize at the time, so my son won’t be eating any of that flavor.   I also got “cocydow” or cookie dough and ‘French dulet’ I think is ‘delight’ for the other flavor, which my son decided to mix together for his dessert.







The Big Boy Update:  My son got tired of tumbling so tonight he went to “Tricking” class instead.   He got home completely revitalized, wanting to show me what he’d learned (which I have to admit was impressive) and then he couldn’t settle down in bed he was so excited.

The Tiny Girl Chronicles:  My daughter has been working on a book at school during her time in the VI room recently.   Today she brought it home.   It was thick with “tactile” elements, illustrating the subject of the story.   I didn’t look to see what the book was about until bedtime, when she was planning on reading it.   Two pages in and I had to call my husband upstairs to hear the story.   It was titled, “Making Happy Pizza” and was the entire process (in significant detail) on how she and my husband make the pizza dough and then the pizzas, complete with toppings.   We were quite impressed with what she wrote and the tactile components she put on each page to illustrate the words in the story.

Finger Pointing

My son sometimes takes something small and blows it all out of proportion.   It happens a lot when he wants to control something that’s out of his control.   It also commonly happens with his sister, who in no way is going to be controlled by her brother.   Today it was about finger pointing.

The finger pointing thing has happened before and my daughter knows when her brother isn’t being nice to her one of the best ways to get at him is to just quietly point a finger in his direction.   He will resort to violence if he can get to her, and since this happens in the car, means she gets hit.   Then there is crying, and yelling and, well, it just goes downhill from there.

Today I told my son, yet again, to just ignore it, her finger wasn’t hurting him.   It’s been other things too, I think the last time it was my daughter making clucking sounds with her tongue, and she wouldn’t stop, not matter how much he screamed, begged or threatened her.   I’ve explained that she is just going to keep doing it if she knows it bothers him, but he’s too upset at that point to be rational.

Today my son had been fairly unkind, controlling and physical with his sister and I wasn’t having it.   The song game we were going to play got stopped and as it escalated with my son, I also pointed my finger at him, saying, “see, it’s not hurting you at all.”

And you would have thought he was going to need hospitalization with the commotion going on in the back seat.   He’s had discussions with his integrative therapist about this before, understanding what’s in your control and what isn’t, but he couldn’t see reason.    My husband called about that time and I answered the phone in the middle of the uproar.

My daughter, completely silent in the back of the car, was probably still pointing her finger at my son.   I was pointing two fingers at him (with autopilot on).   My son was trying to reach my fingers and pull them off my hand while screaming.    My husband had no idea what was going on.

Once my son calmed down I said I’d stop, but he had to be calm.   It took a while, but eventually he gave in.   I need to ask Liz what’s going on in his mind when this happens, because it’s so upsetting to him.   And yet he needs to understand he can’t control other people.   Maybe she can help him and me in how we can better handle similar situations in the future.

The Big Boy Tiny Girl I’m Going To Die Update:   My son, when upset at us will say, “I’m going to die!” or “I’ll kill myself” other such extreme statements.   The play therapist said to not pay any mind to the statements because my son really didn’t understand what it meant, he just knew it was an upsetting to adults and was trying to get a reaction.   I didn’t have an idea about how far off their understanding was about death until tonight when my son, upon hearing he wasn’t getting dessert unless he finished his mashed potatoes, explained he was going to kill himself and be dead.   His sister jumped in on it and said she was too, because we’d taken her purple ball away.   We explained that dead meant forever and then she wouldn’t have the purple ball ever again.   She said, ?what does that mean?”  So we tried to explain death.   She said, “so do I just sleep or something?”  and then “but where am I?”   Both she and her brother really couldn’t understand the ramifications of death.   We didn’t dwell on it though because they finished their dinners and were deciding on what to have for dessert a few minutes later.

Catching Up or Sinking In?

I just finished some “homework”.   It’s not really my homework, but I’ve adopted it as such.   I think I started learning braille at the exact right time based on what my daughter knows and is learning in school.   The things she’s coming home with are not too complicated while having the right amount of variety to keep me on the edge of my learning.

I finished the Uncontracted Braille class.   Think of that as learning the alphabet in braille.   It’s like learning the sign language letters.   There are only twenty-six symbols to learn and then you can communicate with a deaf person.   Only you’d have to spell out every word letter by letter.   It’s nor practical, which is why there are signs for whole words.  

The Uncontracted Braille course taught me a lot about braille, including the all important alphabet.   I learned other things like numbers and punctuation including period, question mark, exclamation mark, colon, semi-colon, parenthesis and quotation marks.    It doesn’t sound like too much, but when you’re looking at a page full of dots, it’s easy to get lost.  

I was eager to complete the first course so I could move onto the Contracted Braille class and learn all the really interesting word signs and letter groupings necessary to read braille as it would be if I encountered it anywhere else.  

But I had to slow down.   There’s only so many combinations you can do with six dots and I started getting confused.   It’s like studying hard for the quiz next week in your history class, getting an A and then realizing you were so focused on the one battle in the civil war that you’ve gotten confused with all the dates and events you’d learned before.  

I’m not in a great hurry though and there’s no time limit on completing the course (although I would like to be fluent in braille because hey, secret code language, right?)  But I needed to practice.   There was only so much coming from the course materials I could work through and finding braille samples online with only the contractions I’d been introduced to is nigh impossible.   There are 180 contractions and I’m only through a fraction of them.  

But I found another source of materials.   A great source: my daughter’s homework and school work. I’ve mentioned this before, but it keeps being this resource I didn’t imagine I’d need or know I’d have that’s helping to solidify my braille reading.  

Tonight I translated three library books my daughter’s braillest sane home for my daughter to read alongside the print versions.    The level of braille is right where I am; my daughter knowing about the same number of contractions that I do.   That means most of the words were uncontracted.

I got a lot of practice tonight and I’m starting to see the braille and not have to think, “okay, so that’s ’t’ and the next letter is ‘r’ and then there are two ‘e’s’.   I just look at it an know the word is ‘tree’.  It’s a relief because I had thought I was stuck for a while, too confused by the addition of new symbols and letter combinations.

I’m lucky I decided to learn braille at what turned out to be just the right time with where my daughter is.

The Big Boy Update:  My husband told my son tonight he was going to have to earn screen time from now on.   My son was upset.   He said he wanted to die.   We tried to calm him down but I think it’s going to take a bit for him to adjust.

The Tiny Girl Chronicles:  My daughter and I were doing the “guess what number I’m thinking” game where you say ‘higher’ or ‘lower” until the person figures out what number you’re thinking of.   My daughter had been guessing for a while at the number I had when she said, “10-4”.  I said, “that’s not a number”.   She laughed and said, “sorry, I was just doing a police code.”

Earning Screens

My children would like to have some screen time.   In the case of my son, he lost screen time for two week (conveniently just before school started) by threatening his entire family with a knife (as soon as he got home and could get to the knife block, he said).   So no screens.   

The children don’t get screen time during the weekdays, but on the weekends my husband and I like to sleep in.   We put their iPads and headphones in a spot in our bedroom, charging, the night before and when they wake up they’re allowed to take the iPads carefully into the living room and watch or play things for part of the day.   

The change at the start of the school year seemed a good time to change the expectation and process for the children as well.  So now, they have to earn screen time.   This can be done in several ways so far.   The other day they helped fold multiple loads of laundry.   This was done with a significant amount of complaining about how long it took and how much there was to fold.   Mentally I was, to say the least, unsympathetic, although I told them they were doing a great job.   After everything was put away they earned equal time in screens. 

My son has been doing a lot of math work with his iPad, which has helped him at school already.   My daughter has done homework as well as using my Mac bluetooth keyboard to work on the Talking Typer program from the American Printing House for the Blind.   She’s learning touch typing with audible support.   Her hands are small, but provided she keeps her fingers at a known reference point, she’s learning the QUERTY layout a few keys at a time. 

Tonight my daughter asked if she could earn screen time so I came down to write this blog post in order to free up my keyboard for her to do some work before bed.   When my son sees her on her iPad I’d venture to guess he’ll ask if he can earn screen time too.   The removal of screens has been positive for the children in multiple ways.   They didn’t like it at first, but they’re becoming more interested. 

The Big Boy Update:  My son and daughter played together in the pool today.   He’s a good friend to his sister, helping her whenever she needs it.   But he annoys her mightily as well.   He wants to play rough—drag her under, push her, pull her—and she doesn’t like that at all.    They’re working on a balance, but after a while my son will go off and find friends he can play with that don’t mind his exuberance.  

The Tiny Girl Chronicles:   My daughter, through the generosity of family members, has raised money for her school.   When you reach certain tiers you get little prizes.   She’s “earned” a mini drone apparently.   They ran out and had to order more, which was sad to her as she told me, “I can’t wait to get the drone.  I’ve been wanting it for my whole life.”

Tactile Math

If you’re reading this blog, I’m sure realized you never know what you’re going to get on a daily basis from me.   Sometimes it’s about my children, sometimes it’s about me.   There’s a lot about my daughter’s eyes and sometimes it’s about a memory from my past.   I don’t really know what I’m going write most days until I sit down.   My least favorite posts are the, “here’s what I did today” as I feel like they’re the most boring.   But since I don’t have to read what I write it’s on you if you’re still here, still sticking around and reading the days in the life of our family.

Regardless of why you’re here, thanks for taking three minutes of your day to read about the trials, tribulations and hopefully as much in the way of cute and funny things that happen with my family and above all, my children.

Now, on to today’s post.   We get lots of work home from my daughter’s school.   To say that public school is different than Montessori school would be an understatement.  Are both children learning?  Absolutely, but the route they’re taking to get there is very different.   Different still is the way my daughter has to “consume” the school work.   First grade has far more work than kindergarten, but fortunately for us we have been given some very dedicated professionals in the field of vision impairment that are working to help my daughter be not only successful, but to excel.

My daughter doesn’t have a learning disability, she has a sensory impairment.   He ability to learn is just fine, provided the materials can be given to her in a fashion she can understand them.   The work to convert the materials is fairly daunting and impressive.   To say we are grateful to our great team of VI teachers would be an understatement.

Take last week’s math work the sighted students did:

Twelve problems, front and back of one page.   The child looks at the problem and enters the three numbers in the provided fields below.   But if you can’t see, what does your personal, handmade work from your braillest look like?

The top of the page says, “Fun Frames” and then the next two lines have the same text as the printed version, explaining what to do.   The picture shows problems one and two.   There were six pages just like this one with two problems on each.   The full braille cells (six dots) represent the twenty spaces. The stickers represent the number my daughter needed to count.   

For her to write her answer, there was a second, answer sheet.  She rolled that into her brailler, found the “1.        tens           ones           =            “ line.   She spaced over to the blank areas and typed the answers in the blank areas between the words and symbols.    And she got them all correct.   

It’s a lot of work to prepare her materials, but it helps her grasp the math concepts tactilely.   To compare, everything in the math world in a Montessori school also has a physical medium component.  I’ve written a few posts on work my son has done that has a physical representation to the concept itself.   It’s all very interesting to me. 

https://agewisdomperspective.blogspot.com/2016/05/hanger-art-artist-unknown.html

https://agewisdomperspective.blogspot.com/2017/03/montessori-math.html

https://agewisdomperspective.blogspot.com/2016/01/the-trinomial-cube.html

My daughter will soon move into traditional math problems using an abacus more.   She already uses one now and knows the numeric operators in braille for plus, minus, multiplication and equals.   It’s fun to watch both children learn.   And it’s nice they both enjoy learning. 

The Big Boy Update:   My son has been doing a lot of math work on the iPad to gain screen time (well worth the bribery price in my opinion, it’s making a difference).   Today when he came home from school he asked me if he earned screen time from the math work he did at school—because he did forty-five minutes worth.   “Unfortunately, no”, I told him.

The Tiny Girl Chronicles:  My daughter got home from school and went outside with her brother.  Thirty minutes later the music therapist arrived just as my daughter, son and friend, Keira, came up the basement stairs.   When I said it was time for music my daughter sighed and said, “oh.  How embarrassing.”  She then said she had wanted to play with Keira, so Keira and her brother got invited to music class, which was fine by me.  

A Much Happier Little Girl

We saw my daughter’s teacher today.  We had scheduled a conference at the first part of the school year, but due to schedules couldn’t meet until today.  My daughter was having a hard time at the beginning of the school year.   She was basically shutting down, collapsing into a ball and not engaging at all in the classroom or during her time in the VI room where she learns specific skills based on her lack of vision.

Today the story was totally different though; it was basically a conversation about how well my daughter was doing—excelling even—in school.   She has a voracious appetite for learning new things, asking for additional work when she gets the current assignment done ahead of the other students.

She is a very fast braillist as well.   This is something we suspected, watching how quickly she types on her braille writer at home, but was interesting to hear first hand from her teacher.   In the thirteen years she’s been teaching in classrooms with up to four visually impaired students at a time, my daughter has a grasp on braille she hasn’t seen before.   As a parent, that’s pretty exciting.

My daughter loves, loves, loves her time in the VI room now.   She was upset her Orientation and Mobility time caused her to miss VI on Tuesdays to the point they moved Mr. Adam’s O&M session to a different time so she could still make her regularly scheduled VI session.

She loves her class and has forged a bond with her teacher.   She also is working very well with her braillest.   Last year her braillest was with her every step of the way, holding her hand figuratively, to help her through things.   This year, we heard today, her braillest sits off to the side and only steps in when there is a need.   This is reasonable and appropriate as the other, sighted, students don’t have a personal assistant in the class.   My daughter’s first grade teacher said this is something she believes strongly in—fostering independence in a child who has the capacity to be successful in life if only those around her give her the chance.

So everyone seems happy now, which is a very good thing.    The only thing that’s a disappointment is there doesn’t seem to have been much vision returned from the latest edema, despite all the drops.   We go to Detroit on Tuesday to see Dr. Trese for an office visit.   Perhaps he’ll have more advice for us then on next steps and if there’s a path to return any of her vision.   And if there isn’t a path, the message today from my daughter’s teacher was that my daughter was always happy and eager to learn and that’s a good thing.   A very good thing.

The Big Boy Update:  My son is good at math, only he’s not got the basic easy problems down so well.   He gets the concepts of more complicated math like subtracting a three digit number from a four digit number, but adding two single digit numbers can trip him up.   So we got two apps.  They’re fun and he can earn screen time to do things he wants: one minute earned for every minute he does math on the iPad apps.  Today alone he’s done thirty minutes of math, including multiplication.   He’s getting better quickly and he’s having fun while he’s doing it.  Win.

The Tiny Girl Chronicles:  My daughter loves pasta.  She had two bowls for breakfast by request.   When I picked her up from Dhruti’s this afternoon I asked her if she wanted pasta for dinner.   She said, “why not?”

Back to Normal?

It’s been a long two weeks.   I titrated off the large dose of Lyrica I’d had to go up to over multiple years to deal with the nerve pain I have from the spinal cord damage I have and then dealt with the withdrawal symptoms including nausea, lack of appetite, exhaustion, rebound pain and pain.   I feel like I spent almost two weeks in bed.

None of it was fun but I wanted to wait it out until I was over the withdrawals to see what my pain level was really like.   The withdrawals from Lyrica aren’t that long in number of days, but this time they were more intense than the last time I did the same thing.   At that time I was at a lower daily dosage though.

In the end I’d lost weight I did’t need to lose and was still tired.   I don’t really know how much pain I was in.   That might sound like a strange thing to say, but it’s the only way I can describe it.   I was sometimes focused on the thing or things that hurt the worst because they were the loudest reporting to my brain.   It’s hard to tell, a significant portion of my body has nerve pain and I just didn’t know anything anymore other than I was in a serious funk because of the withdrawal side effects and, well, pain.

Things leveled out though with yesterday being the end of week two without any Lyrica.   Today I started back on a much lower dose.   And suddenly, an hour later, I felt hugely better.   Better, but without the same dosage as before.   So I’m back to normal.   Or as normal as I suppose I get.

So for now, I’m going to try and keep at the lower dosage and see if I can get the same results with less medication.   I’d rather be on no medication, but it’s better than the pain I suppose.  

The Big Boy Tiny Girl Runner Update:  My son and daughter are doing a Mini Miler race with Uncle Jonathan and Margaret.   Today was the first training practice at an elementary school track.   My son insisted he was faster than Uncle Jonathan but that Uncle Jonathan had more endurance.   And my son was fast.  He had good form as he sprinted in front around the track.   But he didn’t have the endurance.   Or at least he doesn’t yet.   My daughter ran with Margaret holding her hand at a much slower pace.   They both had fun.   Until they got tired and then they insisted on going home.   We told them this was training and they were only half-way through the hour.   That met with some choice comments from them, but they stuck it out.    They both did well.

Chalky Cleanup

We have the Nest Doorbell at our front door.   My husband likes technology so when Nest announced their facial recognition doorbell, he ordered it straight away.   I have to say, it’s pretty cool, as cool things go.   It records motion, recognizes faces and lets you know when people it knows are at the door.   It’s also made answering the door a thing of the past as my children love to run to the door to let their friends inside when they come to visit.

Yesterday we were out bowling when we got multiple notifications on our phones that children were at the front door.   My husband pulled up the camera feed and saw two neighbor children at the front door, but seeing as our children didn’t answer, they decided to play with the chalk that sits on the front porch instead.   And by playing with it, I mean they were drawing on the walls and throwing it.  

My husband talked to them through the doorbell (another feature) to tell them it was fine to play, but to please clean up the chalk.   At the sound of his voice, the boys scattered.   My husband sent a text to the neighbors and told them what had happened.   Let me say here that these boys are great children, but children are prone to be children and they were just having fun.

Later last night my husband went over to one of our neighbor’s houses to watch a movie and he showed them the video.   Both fathers asked for a copy of the video and said they were sending the boys over today to clean up the mess.    Today they did just that.   Both boys were so polite in apologizing.   They got soap and cleaned the porch probably much more than it needed to be cleaned.  

While they were cleaning the adults all talked and agreed we were all in this parenting thing together and fully supported each other in laying down laws and even punishments as needed.   We all want the same thing: respectful, maturing children.   But it takes time.  

I think the doorbell camera went over so well we won’t be the only ones on the street with the Nest Doorbell soon.   The other fathers loved it.

The Big Boy Update:  Before bed tonight I showed my son my Andy Goldsworthy art book, A Collaboration With Nature.   As an artist, he finds things in nature and then rearranges them into beautiful settings that couldn’t or wouldn’t otherwise appear.   It’s mostly a picture book, but it’s fascinating to me.   I had to promise my son we’d look through the rest of the book tomorrow as it was past bedtime and we had to stop tonight.

The Tiny Girl Chronicles:  My daughter loves cards.  We played Uno for an hour this afternoon after camp.   She wanted to change/make up/amend rules, but found out sometimes that didn’t always work to her advantage.   Having braille versions of the cards helped her be independent and play the game without help, albeit a bit more slowly as she had to read every card and couldn’t see her hand at a glance like sighted people do.