Thursday, August 31, 2017

Another Hematoma

My daughter was having a pillow fight with my son, husband and me tonight.   She wanted to be the referee and hand out points for well-placed pillow hits.   I don’t know how she was figuring who got what for points because I was making sure my husband and son weren’t going to win just because they’d decided to gang up on me.  And that’s when it happened.

My daughter was in the frog position she squats in frequently.   I quickly bent down to grab a recently landed pillow and at the same time she launched into the air and clocked me right on the edge of my left eye orbit.

We both fell to the ground with me making some loud painful sound and holding my face while she did that long pause before launching into a fit of crying.    My son went downstairs to get ice packs and my husband came over to look at me.

Tonight it wasn’t my daughter that got the hematoma, it was me.    It grew to about a firm grape-sized knot on my face.   I took some pictures and I looked like a Klingon without all the makeup.   Three minutes later my daughter was fine.  

I called my chiropractor and asked what I needed to do.   He told me where to prod (around the orbit) and since that didn’t make me scream like a little girl he said it was probably not broken.   He gave me some icing advice and had me prod around in another spot at the base of the back of my skull and when I told him it hurt where he predicted it would as a result of the collision he told me to come see him tomorrow and he’d fix it.   So now I’m icing per his directions, not carrying furniture from the basement to the attic tonight and going to bed soon.  
   
The Big Boy Update:  My son bought home a bear from his visit with Nana and Papa this past weekend.   He has been all about this bear that looks like the traditional Teddy Bear wearing a blue shirt bearing the phrase, “Home Sweet Home”.   My son told me last night, “I wish my bear was alive.”  We talked about the movie Pinocchio for a bit.

The Tiny Girl Chronicles:  My daughter has been interested in fire drills due to the practice runs they’ve had at her new school.   She asked me, “why don’t we have fire drills at home?”   Then she wanted to know to know,   “What about our cars?”  But the most distressing thing to her was If we have a fire in our house and it burns down, we would get out and leave our belongings behind.   I explained we could always get more things, but there was only one of her.   She got more upset asking, “but will we have to get new iPads because I like how my case feels.”

Wednesday, August 30, 2017

Sight Reading Braille

My daughter is doing very well with braille in some ways.   This afternoon she wanted to work on the new brailler they sent home from school.   She can type her name surprisingly fast, which is interesting to see because a brailler doesn’t work like a regular typewriter does.

There are six dots in a braille “cell” in an arrangement of two columns of three dots each.   To type a letter or symbol you press the keys associated with the dots you want at the same time.   The dots are numbered one through six in an order you have to get used to because it’s not left to right but instead is 3,2,1 <space key> 4, 5, 6.   Once you understand how those numbers “swing” or translate from a straight line into the rectangular shape of the “cell” it makes a lot of sense, but it takes a while to get your mind around that translation not unlike what you have to do when reading music notes and matching that to keys on a piano.

Watching someone type on a brailler is a lot like what it looks like to my untrained eye when someone is using a shorthand typewriter—in other words, foreign.  This is mostly because instead of pressing one key at a time like you do on a traditional keyboard, you press a combination of keys at the same time.  And yet my daughter can type her name and other things very quickly.   She can also tell you things like, ‘r’ is 1,2,3,5 and what to do to indicate a capital letter or a number.   And she can verify if what she’s typed is indeed what she was aiming for.   But she can’t read braille well yet.

And I don’t have any complaints because I can’t either.   I’ve been told it’s quite challenging to learn to effectively read braille as an adult with any speed or proficiency.   I was thinking I was getting fairly good at reading braille until I had a realization the other day.   Yes, I can read the dots and with a little cheat chart I keep in our living room I can figure out what each letter is.  I even know a few of the letters without having to refer to the chart.    But I’ve been cheating.

I’m cheating because I’m not “reading” the braille, I’m “seeing” the braille.   I’m looking at the piece of paper and using my eyes I can see what the dot combinations are and I’m mapping that to the corresponding letters.    Using my fingers to truly read the braille is another thing altogether.   Today on the way home from school my daughter was handing me flash cards with letters, seeing if I could tell what the letter was, admonishing me to not look, only to feel.   I took the card into my lap and tried to discern with my fingers alone which dots were on the card.   And I was failing.

I got a good bit of them, asking her, “what letter is 1,2,3?”  But there were times I couldn’t even tell how many dots were there.   I’d hand the card back, asking her if there were two or three dots on the card and that I thought there were only two.   She’d laugh and tell me no, there were three and then be happy she knew something I didn’t know.

Reading braille is a lot harder than seeing braille.

The Big Boy Update:  It has been established that my son is, not unlike other children his age, obsessed with Minecraft.   In that vein, this past weekend while the children were at Nana and Papa’s we got a text from Nana saying, “your son is too much.   He wants me to tell him how the very first cow was spawned.  Where does he get these ideas?”

The Tiny Girl Chronicles:  My daughter has not only accepted that eye drops happen a lot, she’s even gotten interested in making sure they happen.   She has her own knock knock joke about it.   She’s done this for almost a week now.   She’ll say, “knock knock” to which I answer, “who’s there?”   She’ll say, “eyeballs”.   Then I ask, “eyeballs who?” and then she laughs and says, “we forgot to do eyedrops!”

Tuesday, August 29, 2017

The Piano Predicament

My daughter and son visited my in-laws this past weekend.   My daughter has been enjoying playing their piano and they’ve offered it to us in the past but we’ve never accepted.   My mother has also offered her piano but we’ve declined as well because we didn’t have a spot we thought would work and we were having a lot of musical success with our keyboard which is much easier to move around.  

This time, after seeing a video my father-in-law took of my daughter we decided to take them up on their offer.   Yesterday I made a call to a mover we work with in our real estate business and today they went to my in-law’s town to pick up the piano.   We rearranged the bonus room on our second floor in preparation for the arrival of the piano this afternoon and I got advice from our music therapist on the best wall to place the piano for sound and tuning purposes.

They arrived and we ran into a problem—it wouldn’t make the turn up the stairs.   We have two stairs, the front being wood and the back being carpet.   They said the piano was so heavy it would mar the wood stairs badly and could even break them.   So we were stuck, literally, with a piano that could really only go one place—a wall in our basement my husband and I hadn’t wanted to put it.   That, our our mechanical room which we’re currently redoing to make it more of a room instead of a mechanical/stuff storage room.

We didn’t want to put it in the mechanical, soon to be game and workshop room, for multiple reasons.  This left the wall in the basement we weren’t keen on.   Only the movers couldn’t bring the piano down the outside of the house because the grass was wet and the moving cart would sink into the grass.    So now we have a piano sitting in a humid and hot garage, which is definitely not ideal.

We debated our options.   We could send the piano back to my in-laws or we could put it in the basement in the mechanical room or the wall of the basement main living area.   We dithered.    The movers left and the company owner called to make sure were weren’t mad at them, which we most certainly were not.   It wasn’t their fault the piano couldn’t make the turn up the stairs.   The owner was most gracious, offering to take the piano back to my in-laws for free.  

After some discussion my husband and I decided to put the piano in that spot we initially hadn’t wanted it, moving the pinball machine in the location now into the soon to be game room.    So now we’re off to get large sheets of plywood which we’ll use for the walls in the mechanical room later but for now will be the hard surface on which the piano will be rolled down the hill into our basement entrance doors.     All that will happen on Friday.

For now. my daughter doesn’t seem to mind the piano being in the garage—it hasn’t stopped her from playing it since it arrived.

The Big Boy Update:   My son came out of the bedroom after I put them to sleep for the night.  He was upset.   He said he didn’t want dad and me to become grandparents.   He didn’t want go grow up and he wanted someone to invent a pill to prevent parents from becoming grandparents.   I suggested he could work on that as an invention.   He went back to bed thinking about how he might solve this “problem”.

The Tiny Girl Chronicles:  My daughter is doing very well in everything at school.  She’s excelling in fact, except for one area.   She isn’t reading braille with her fingers well.   She can type braille very well with the brailler, but her fingers aren’t recognizing the letters as she runs them over the paper.   So we have homework and they’re working on this one part as well at school.

Monday, August 28, 2017

Crying Over Change

My children do not like change.   It doesn’t matter what it is, regardless of how exciting or beneficial it might be to them, if it involves changes in something they like, they against it.  

Let me give you an example.   My children had just visited Nana and Papa for the weekend in Pinehurst.   They had returned home yesterday and before my in-laws left we all went out to dinner.   I told my children while we were on the way to dinner that they should tell Nana and Papa they wanted them to move to our town so we could see them more often.

They love their grandparents and I would have thought the idea of having them in town all the time would be an exciting one and a cute thing for my children to ask but it backfired.   We almost arrived at the restaurant with two bawling children who were simply imagining the horror of Nana and Papa living anywhere other than where they lived now.    My daughter said, “I don’t want them to move from Pinehurst.  I love their boat.   Does their boat have wheels?”   My son explained that boats could have wheels but then got upset saying he didn’t want them to move either.

“Well guys, they’re not moving", I said.   But I’d triggered them and there wasn’t much to do other than wait for them move on from the subject, something that quickly happened when we got out of the car.

Here’s another example from today: my daughter simply loves playing the piano.   She spent a lot of time on Nana’s piano this past weekend and when we got home she asked us if we’d like to have her piano for our house here.   Phone calls were made and tomorrow (through some fluke of scheduling) we’re having their piano moved to our house.  

Today my husband and I rearranged the bonus room to make space for the piano.   The room is largely the same but some things had to be moved out and some relocated.   When my daughter got home from school today I took her upstairs and let her see/feel what had changed in the room.   Then I told her what was going to arrive tomorrow from Nana and Papa’s house.   And she cried.    She liked the room the way it was arranged before.   What would Nana and Papa do without their piano?   What would she play on when she when went to visit them?   Where did the keyboard go?  And she didn’t like the new location of the table.   My son’s reaction was much the same save the crying.  

When the piano arrives they will love it, I am sure.   It’s the change part that’s hard for them.

The Big Boy Update:  My son was playing Minecraft for the last day of his summer vacation.   Digital goes away at the start of school tomorrow except weekends.   He was doing some pretty neat stuff though and he asked dad to come over and see his creations.   One of them was doing a strange flashing thing which he said was, “kind of glitchy”.  My favorite was a maze he made out of doors.   You walked through the maze normally until you stepped on pressure plates he’d placed around in various spots.   When you did this doors would open or close on you, forcing you to find a different path out.

The Tiny Girl Chronicles:  My daughter had a rough day today.   There must have been some problems with the school transportation.   We know her regular driver was in the hospital last week.   She was picked up late but by a very nice driver we’ve never met before.   And then we realized she hadn’t arrived at school.   She didn’t get to school until l0:21.  Then she wasn’t picked up until an hour after school let out and didn’t get home until after 6:00.  So there were issues.   The driver today was very, very nice but she had been given too much to do in one day and it just couldn’t be done in a reasonable time.

Sunday, August 27, 2017

Accommodations

My daughter has a lot of accommodations in school to help her due to her vision impairment.   As one of her teachers said, “she isn’t handicapped, she has a sensory impairment.   She’s very mentally capable if we can just present her the information in a format she can consume.”

And we’re starting to see how that’s playing out in the materials she’s bringing home.   For instance, the class has sets of “sight words” they’re working on each week.   If my daughter could see the large bold letters I can guarantee you she would recognize the patterns and know the words easily, especially after seeing letters all her life.   But since she can’t see and can’t read faster than one letter at a time—in braille which she’s learning—she’s having a longer time learning initially.

Her teachers realized she’s guessing and not really reading the words so they’ve backtracked her to get a better foundation.    From a braille typing perspective, she can type the letters and make the words, she’s just having some challenges reading the letters with her fingers.   And heck, folks, I can’t read them myself.  I can read the braille words faster by visually looking at the little raised dots, but my fingers are completely lost.   We’re not worried though; once she’s able to read with her fingers she’s going to easily catch back up.

Another accommodation is in the materials the students are doing that can’t be seen by my daughter in the traditional way.   Here’s an example:


This is to work on fine motor skills with writing/drawing.   My daughter would be great at this if she could see because she holds a pencil/crayon properly from her Montessori school years, but since she can’t see it the following was prepared for her by her in-classroom VI teacher:


It’s hard to see, but the teacher has recreated the triangles and squares in braille dots and surrounded each section with a braille dot rectangle.   Then she’s used a bright contrasting marker to outline the shapes.    My daughter had to feel for the dots with her right hand and then draw along them with her left hand (she’s left-handed).    This is tricker than it sounds and my daughter can draw much better than it would appear from the above, but she was learning to follow lines in this work.

The page you see above is one of many such accommodations we see come home each week.   It’s very impressive how much time goes into helping my daughter, and we are grateful for all of it.

The Big Boy Update:  We went to a sushi restaurant tonight.   My son had a bowl of white rice with his meal and in it he found a very tiny fish bone.   And he was excited.  He held on to it the entire meal and he wanted to know if he could take it home with him.   My husband’s putting the children to bed right now but I wouldn’t be surprised to find out he’s taken it to bed and is still holding on to it in the morning. 

The Tiny Girl Chronicles:  My children got home today from visiting with Nana and Papa for the weekend.   When they came into the house we told them there was a lemonade stand around the corner. My daughter was quite excited to go.   We told her we had to find some quarters before we could walk over, but this wasn’t fast enough for her.   She complained loudly, “come on, I’m not patient!”

Saturday, August 26, 2017

Glabella

Remember when I broke my face visiting my brother- and sister-in-law in New Jersey?  The spot I cut (all the way to my brain as my husband exaggeratingly declared) is in-between my eyebrows or technically known as the glabella.   Technically it’s the “smooth part above and between the eyebrows” and mine isn’t so smooth anymore.

This is due in part to age and wrinkle lines I have from squinting or frowning and laughing.   It’s also due to that nasty cut.    But it’s getting better.   I’ve been keeping it covered with a steristrip most of the time and I’m starting to work on breaking up the scar tissue by aggressively rubbing it now that the wound part has healed.   I’m putting other things on it to reduce scaring.   Overall considering it’s been less than a month since the injury, it’s looking fairly good.

We didn’t get a picture of the cut the night of, but from what I can tell from pictures two days later it’s going to be all right.   There is a question of the alignment of tissues and I’m wondering how noticeable the scar will be in a year or two, but I’m working on minimizing it as much as I can because I don’t want to scare off young children and puppies.

The Big Boy Update:  My daughter has the #2 cubby in her class.   My brother was excited for her and said so by saying, “first is the worst…”   The remainder of the little rhyme is “…second is the best, third is the one with the treasure chest.”

The Tiny Girl Chronicles:  My daughter had breakfast this morning with Hermione, her favorite plush toy (stuffed animal).   My mother-in-law sent a picture with her happily eating her breakfast beside Hermione.   They each had a plate of food.   I noticed Hermione chose a healthy breakfast of fruit.  

Friday, August 25, 2017

Home Alone

My in-laws came to get my children for the weekend.   They wanted to have some time to spend with the children without us.   My husband and I were pretty upset about it.   We didn’t want them to leave.   We were sad.   Okay, you know I’m lying, right?

My in-laws got to the house at almost the same time as my daughter got home from school and within the half-hour they were gone.   We’ve gotten pictures with a neighbor’s dog sitting on their laps and my children smiling very big smiles indeed.

Back here at home my husband made dinner for us and we realized half-way through dinner we’d had an entire conversation without being interrupted.  I had forgotten what that was like.

I’d like to say we have big plans for the weekend but it’s mostly getting things done we’ve been meaning to get done.   Both my husband and I have had a summer cough/cold with him having the worst of it.  

So get caught up on relaxing.   And enjoy the silence of the house.   Sounds like a great weekend to to me.

The Big Boy Update:  A few weeks ago my son would travel all over the house with his iPad, even though he wasn’t allowed to.   Then we made some rules and he’s only allowed to have it in one place now—on the sofa.   It took several times losing the iPad for this to become habit with him but he’s got it down now as the iPad never goes anywhere anymore.

The Tiny Girl Chronicles:  My daughter knows that the numbers one through zero in braille correspond to the letters a through j.    The way you know it’s a number is the letter is preceded by an, “in-der-kay-ter” (indicator) as my daughter calls it.

Thursday, August 24, 2017

Where There Minds Are

My husband and I met with our children’s play therapist today to talk about how things have been going.   When we first came in both she and we had an initial short topic to discuss it turns out—my son is doing just fine and doesn’t need to be seen by her anymore.   We’ve noticed a big change in his behavior and mental state at home and she’s seen the same thing.   She said when he’s eight or nine we might see a big change as he enters third grade, but for now, he’s doing very well.

Then we spent the rest of the time talking about my daughter.   She told us some things she’d been noticing.   She said that cognitive-wise she’s a step behind because of the vision loss, but that her brain is five steps ahead in compensating and it’s showing in recent behavior changes.   What’s happening is she’s realizing more that the rest of us can do something she can’t (see) and she has a newfound mistrust of people as a result.

This is manifesting itself as defiance and lying.   She wants control.   She doesn’t like what’s happening to her and she’s trying to gain control by paying careful attention to what’s going on around her.   And she’s sharp because she hears everything and uses her other senses as well to figure out things.   You can’t get away with things you used to be able to.  For instance if she says to close your eyes while she does something she doesn’t necessarily trust us anymore to do so.   She’ll ask the person to turn around and then she even might feel to make sure she can touch your back to know you have actually turned around.  

The pushing of boundaries, being defiant and even lying is to try and assert control and to show she is capable and wants to show she can do things.   The advice we got was to continue to be consistent with her.  Don’t argue with her about lying.   Just lay down a consequence—but give her three chances.    And if she cries (unless she’s hurt) ignore it or say, “I know, it’s sad.   Let me know when you’re done” because she’s using that as a tool too.  Dhruti said at about seven-years-old she’ll realize it’s embarrassing and stop on her own.

And then she gave us an interesting suggestion.   She told us we could bribe her.   But she said it had to be handled carefully.  My daughter is feisty in temperament and you can change a behavior with feisty children with an incentive (bribe) because they get something they want as a result.   My son however is of fearful temperament.   A fearful child will see that they did something and for instance, got a sticker as a reward, because that made the adult happy—not because the child did something good.    So it’s tricky, but we came up with some strategies we think will work well for each of our children.

For now we’re going to keep sending my daughter to the play therapist until she’s finished processing what she’s dealing with.   For my son, he’s graduated again.  I’m not sure he’s going to be happy about that because he loves seeing Dhruti.

The Big Boy Update:  My son asked me the other day, “how do ceilings in mines stay up?”  I explained about struts and supports and the general sturdiness of rock and then he told me, “well, that’s not how it works in Minecraft”.    I should have known that’s what he was talking about.

The Tiny Girl Chronicles:  Yesterday’s procedure went very well for my daughter aside from one thing that happened when she woke up.   When she comes out of anesthesia she’s usually upset, doesn’t want to be touched and screams a lot.   It takes a bit for her to calm down.   But this time she was upset over something else—she thought she couldn’t see.    The nurse told her there was ointment in her eyes and she was fine and her vision was okay.    By the time she was lucid again she’d blinked away the ointment, but it was a scary time for her for a bit.   Fortunately I think she doesn’t ever remember the post-anesthesia time so I’m hoping she won’t have any anxiety about it for next time.

Wednesday, August 23, 2017

The Refraction

Today we got a refraction on my daughter’s eyes.   I’m still in a bit of a state of shock.  I didn’t think it was going to ever happen because every time we got close to being able to get a true prescription on her along many of the steps in this journey of vision, something would change.   Typically that something would be downhill or backtrack us or just the message we had to wait <insert non-specific amount of months here>.

But it happened.   There was no bad news really in the exam under anesthesia today (done locally by our favorite pediatric ophthalmologist).   The left eye has a little hematoma left but not much that hasn’t settled.  The fovus looks good and the optic nerve looks healthy.   The retina is attached aside from some perimeter folds that are likely never going to reattach because of some stretching that occurred over time.    Her pressure was great and there just wasn’t any real bad news about the left eye.

The right eye is confusing.  Can it see at all?  No.  But it’s completely blocked again with scar tissue internally so she can’t see out.   We’ll find out more on that the next time we see her retina surgeon in two months.  Oh, and we’re dropping down drops from twelve times a day to only four.   Which I swear feels like we got a life sentence reduced.

So about that refraction… My daughter had been preferring her +17 prescription lenses for many months now.   It turns out her actual refraction is +18.5, which means across the +12, +17 and +22 lenses she was picking the ones that worked the best.    I had her some glasses made this afternoon at the +18.5 and they’ll have some bifocals ready for her next week that add a +21.5 in the bottom corner.

And if you didn’t just catch that, I said I had glasses made for her this afternoon—something I didn’t think was possible.   Everywhere I’ve talked to has problems making lenses at that high a prescription and when the can make them it’s a long process to get them sent to a lab, make them, check them for quality and then have them back to me in three weeks.    But I found a place locally with an in-house lab, better prices than what I was being quoted elsewhere and the materials to make the high prescription my daughter needs—in three hours, for $129.

So overall, a great day.   Tomorrow we’ll have the +18.5 lenses and I’ll see if my daughter can tell a difference.   We’re not sure it will be drastic or even noticeable, but I will take any improvement we can get.

The Big Boy Update:  My son will make a sound, typically a moaning or grunting sound and ask us which character from Minecraft it is.   I don’t know the game well but when he says which he’s imitating and we hear it, he’s spot on.   It’s kind of eerie.

The Tiny Girl Chronicles:  My daughter wanted to play Minecraft too and asked me to load it onto her iPad.   She’s also played it on the Xbox with the big television in the basement.   And she can see things when she does like she’s spinning around and looking at the sky or that she’s stuck in a corner.    She’s not doing a lot of useful things in the game other than playing for ten minutes with a lot of help from her brother and mostly getting lost, but she’s not giving up.

Tuesday, August 22, 2017

The Long Haul

Superstition is all about trying to control something you have no control over.   Saying, “you spoke too soon” is a good example, as if by simply saying something about a situation you sway power over the outcome.   And yet it’s something we do all the time.

I don’t believe in superstition per se, but it is a cloying idea.   For our trip to the solar eclipse totality zone I had low expectations we’d come out unscathed with long a long ride there or home with traffic.   And I complained about the possibility of traffic to many people both prior to and during the trip.    And then we were almost home.

We were beyond the major traffic routes and had charged without wait at the last major charging spot and I had a conversation with my mother about how we made it clear without traffic to speak of.   And then it happened: a tractor trailer went off the embankment right before us, causing us to sit on the road for over five hours delaying our arrival home until 5:30AM.  

My husband was stoic and drove the entire time (he prefers to drive) and the children sleeping through the night.   We made it eventually and I know nothing I said influenced the trip in any way, but it still is something your mind jumps to, even though we possess no control at all over.

The Big Boy Update:  My son asked multiple times on the trip for me to rub very hard (“harder mom”) in a very specific spot in his lower back.   The same spot I have pain in when my SI joint is misaligned. I took him to the chiropractor this morning and he said as we walked in, “I am so not ready for this” which is interesting, because he’s liked going the few times he’s gone before.   Right after the doctor adjusted him (his SI was apparently torqued a lot) my son said, “actually, that feels a lot better”.

The Tiny Girl Chronicles:  My daughter was able to experience the solar eclipse in a questionable way.   We protected her eyes with the eclipse glasses but I don’t think she could see the sun through them because she typically wouldn’t look in the direction of the sun when she used them.   But she could experience the total darkness of the full eclipse.    When the sun came back out she danced around though saying, “I can see you again, favorite sun!”

The Tiny Girl Chronicles:

Monday, August 21, 2017

Twice Night

It was solar eclipse day and it was a long time in preparation for our family leading up to today.   We were invited by some close friends to join them many months ago.   Initially we were going to Charleston, South Carolina but changed locations to past Knoxville, Tennessee due to poor weather conditions in Charleston.   The change in venue turned out to be a good one because the weather in Charleston was poor and where we were in Tennessee at a state park was cloudless and perfect conditions, albeit hot.

Due to the lack of hotel rooms close to the totality zone we were about an hour-and-a-half away last night from the location we planned on viewing the eclipse but the travel day yesterday went without incident, the hotel was quite nice and the friends we met there were fun and happy company.

We went to sleep early so we could get up and drive to the site by seven o’clock in the morning to secure a good place.    Once we arrived there we had only to wait until the eclipse started.   That turned out to be a lot of fun to my son who discovered the two older boys with our group were avid Minecraft players.   They joined a server on one of their phones and played together.   The two girls didn’t want to be left out, my daughter asking if I could install Minecraft on her iPad so she could play too.   That’s right, she can see enough to do something on hers.   She asked for a lot of help, but she participated in her own way and wasn’t dismayed that she couldn’t do that much.  

When the eclipse started everyone was excited.   Seeing the sun being “eaten” by the moon with our protective glasses was something many of us had never experienced before.   Almost ninety minutes later and we were ready for the totality of the full eclipse.   As the eclipse progressed we noticed a few things:
  • The heat of the sun was diminishing significantly as more and more of it was covered even though it appeared very bright still
  • The color of light was strange.   It wasn’t like cloud cover.   It wasn’t like sunrise or sunset.   It was somehow different causing even the grass to have a strange almost blue-like appearance. 
  • Shortly before full coverage even the bugs in the woods got into the experience, starting to make nighttime noises
  • Just before the last seconds taking a quick glance up in the direction of the sun could still dazzle you because our sun is just that powerful a star.
And then it was time.   The dimness of the sun was slow and gradual until right at the end and then it went from light to night in less than a minute.   It was astounding.   I didn’t expect to be moved by the experience like I was but when it was safe to look up and the sun was a shimmering corona of light bending around the gravity of the moon I realized what an incredible experience we were witnessing.   

Everyone cheered.   I was videoing the last minute with my cell phone and so far I’ve replayed the video four times already because it was just that amazing.    We looked up and saw stars.   There was a very bright planet clearly visible. 

We were not only in the totality zone, we were in the very center of the totality and we got to experience two-and-a-half minutes of the sun as a corona hidden behind the moon.   And then the false night was over just as quickly as it had come.   

I’d like to tell you we stayed around for the next ninety minutes as the moon receded from in front of the sun but we didn’t.   We did quick hugs goodbye and bolted.   We were deep in a state park and knew beating both traffic out and getting to superchargers before there was a queue would make our late arrival home not even later. 

We’re finishing our second charging stop now and have made it the trip home with very little in the way of traffic and waits, although we’ve gotten to the charging spots with luck before there was a line.   It’ll be a late night and a lot of driving for the short time the eclipse took place, but on the whole, it was absolutely worth experiencing a day that had two nights.  

The Big Boy Update:   I made a mistake and brought my son’s old crocs instead of his newer, larger ones.   I didn’t realize he’d had a blister worn from two days of wearing them.   This afternoon he was quite upset about it because it was painful, exclaiming angrily, “it’s all because of the stupid eclipse!”  (He did have a good time on the trip otherwise though.)

The Tiny Girl Chronicles:  We’re in the car driving home while I write this.   I hadn’t been typing for long in the front seat when my daughter said, “Mom, let me guess—blog post?”  I said she was correct but how did she know?  She told me with confidence, “ I just know the way of life.”   She was eating some little tiny crackers with the admonition to be careful not to spill them.   A short while later she had finished the crackers and announced, “ I got less than one on the floor”.  We asked how she could spill less than one and she said, “that’s zero!  You know, zero.”

Sunday, August 20, 2017

Towards The Eclipse

We embarked today on a trip to see the eclipse.   We’re in the line of partial eclipse but apparently 92% eclipse is significantly different in overall experience when compared to 100% eclipse.   We’ve had reservations for something like eight months now in Charleston, South Carolina but the weather there turns out to be predicated at poor with cloud coverage.   And if you haven’t checked out the sun before now, clouds make it hard to see the sun, particularly when the moon is planning on covering up the sun for an exciting three minutes.  

So we changed locations and headed to Knoxville, Tennessee this morning.   There have been warnings about traffic for weeks and I am one of those travel pessimists so I was expecting today’s travel to be a mess.   But it wasn’t, which was nice.   We also have an electric car that requires recharging from time to time and we happily ran into very open Tesla Supercharging stops so our two charging breaks were quick and without incident.  

We arrived at our hotel to find the one charging spot available so we’re currently checked in and our car is charging up.   We’ll move it once we’re fully charged so other cars can use it.    We’re with a group of four families, one who also has a Tesla but he was much lower on charge and they’re moving his car to a faster charging location a few miles away.   We’ll get his car after dinner sometime.  

How did we get a hotel reservation at almost midnight on Friday night?   Well, we’re not in the total eclipse zone; we’re a little over an hour away from it.   But overall it works out as we’ll hopefully be able to find a place to eat easily tonight and tomorrow morning we’ll head out early having packed a picnic lunch.  

One of the members of our group has been diligently scouting out the best locations for tomorrow meaning amenities and other things going on not to mention lack of clouds.   Another one of the group is coordinating dinner for the thirteen of us to be had shortly so we can all go out to sleep early so we can head out first thing in the morning.   And, to top it all off, one of our party members delivered two bottles of wine to our room which is where the pre-eclipse party is happening after dinner.

Tomorrow we will likely run into traffic on the way home and possibly on the way to the total eclipse zone.   We’ll find out tomorrow.

The Big Boy Update:  My son suffers from car sickness from time to time.   Today while at our first charging stop we were beside a drug store and I asked the pharmacist if he was old enough for anything.   It turns out there is dramamine for children and one grape-flavored pill later my son was fine the remainder of the trip.   He doesn’t have issues often and it’s usually on longer trips after several hours but this time we were going through and over mountains and it was just too much for him.   He held on to the airline sick bag for a while before we got the dramamine but afterwards he had a happy ride.

The Tiny Girl Chronicles:  My daughter is most excited about the air mattress she and her brother will be sleeping on tonight.   She is currently playing songs on her iPad and dancing around on the mattress.

Saturday, August 19, 2017

Even The Thermostats Are Preparing

I went over to one of our thermostats today—we have the Nest, learning thermostats—to find this unexpected message:


We’ll be out of town for the eclipse (a journey I’m going on with extreme trepidation given the predictions of traffic, but we’re going nonetheless) so our thermostats will be in away mode, but I wanted to know more so I clicked the, “TELL ME MORE” option to find: 


So I selected, “COUNT ME IN”.    That’s a lot of solar panels.   It’s pretty cool to know even our thermostats are getting excited about the solar eclipse.  Or maybe I mean prepared? I suppose it’s both.

The Big Boy Update: My son has really been enjoying playing Minecraft this summer.   He is very good at it and since it’s a creative environment where he builds structures using blocks similar to what you’d do with Legos, it’s been interesting to watch what he comes up with.   Today he built a house on the edge of a lake including a swimming pool at the edge of the water.   As he was showing me around his house he said, “and now I have to go add a hot tub.”

The Tiny Girl Chronicles:  My daughter has been climbing the door frames and hanging from the top of the door jambs.   She can do this on all three floors but it’s most impressive on the main floor, or perhaps most scary, because there we have ten-foot ceilings.  This evening I noticed blood around one of the doors and realized she’d done it so much she had worn the skin on the tip of one her fingers down to the point it was bleeding.   After cleaning up blood from around three doors (needing a chair to get to the high parts) I told her no more climbing until we got home from the trip.   She cried for ten minutes.   I’m not sure if she was more upset about the bleeding finger or being told she had to stop climbing.

Friday, August 18, 2017

Nicer / Meaner

The Big Boy Tiny Girl Behavioral Update:  
My children have gone through a switch in temperaments lately.   My son was inflexible (and he still is to a degree) while my daughter was easy going and rolled with changes with out much complaint.   Lately though they’ve been switching roles.

My son has been so kind and nice, especially to his sister.   He’s more willing to do things, even when he’s on the iPad, and he’s been overall a much more relaxed person.   My daughter hasn’t been handling things well at all.   Maybe it’s the new school and changes with her vision (which is slightly improved) and she’s also reacting by not listening and intentionally defying us repeatedly.

And I’ve been losing my temper as a result.    She hasn’t liked this but we’ve not liked her ignoring using despite repeated kind-worded requests.   Tonight I lost it at my daughter and yelled at her.    She claimed she didn’t hear me, even though she clearly did.  

My son remained calm throughout but a few minutes later he came to me with the children’s microphone and handed it to me saying, “here mom, you can use this if my sister doesn’t hear you next time.”

Thursday, August 17, 2017

Peanut Butter Crackers and Paint Update

Two quick topics tonight and then I’m going to bed.   First is peanut butter crackers.   My son is allergic to peanut butter or perhaps not allergic, but he has a poor reaction to it and gets all itchy and drools so it’s not worth it.   My husband doesn’t like nuts and couple that with most schools having a prohibition on peanut butter or peanut products in the children’s lunches and snacks and my daughter has very little exposure.   Which is a shame, because peanut butter is pretty good stuff.

I got her some peanut butter crackers though and told her about them this morning.   I forgot about them but she didn’t because as soon as she came in from school she said, “crackers!” and ran to the pantry.   I didn’t know what she was doing and by the time I checked on her she had a plate and was half-way through the packet of crackers.    I’m glad she likes them.   Maybe she and I can enjoy peanut butter even if the men in our family can’t.

Second topic: update on that gold spattered sharpie.   My husband and I had decided it was a forgone conclusion we were going to have to paint a whole wall to get the mess of sharpie covered up.   We had gotten the floor and some of the other areas cleaned up with acetone but the flat wall paint would come off with acetone almost as readily as the sharpie.   And then I accidentally discovered something.

I had an issue with the fireplace glass cover that required some adjusting.   Adjusting of the glass plate and removal of some white, protective material that had been visible at the top edge.    After doing some adjusting with a screwdriver and some removal of sticky material with an exact knife I got some adhesive remover I use with my daughter for getting the tape residue off her face after surgeries where her eyes are taped up with gunky sticky tape.

On a lark I wondered how sharpie would hold up to adhesive remover and guess what?  It melted.   It dissolved immediately.   It didn’t even touch the paint because it happened so fast.   What took my husband an hour working together to get the minor areas cleaned up—leaving the largest most horrific mess in plain sight—took me all of three minutes to completely remove.   And remove without a trace it was ever there.

I feel like I should post somewhere in all caps on some site to help other parents in similar messes from their exuberant children.   I keep looking at our cleanly painted wall in disbelief every time I walk by.

The Big Boy Update:  My son has been loving MineCraft.   He likes playing it on the large television in the basement and of late he likes to play with one of the neighbor friends.   He’ll come up and instead of asking how to do “multiplayer”, the traditional term, he wants to know how to start, “double player”.

The Tiny Girl Chronicles:  My daughter found “spikey” the other day.   This is one of those dryer balls but to her it’s a soothing device.   She had it in her class two years ago when she lost her sight and it brought her much comfort.   I found her two other spikey balls and she’s been hiding them all over the house in places only she can find and then bringing them out again when she needs them—including sleeping with them.

I forgot I ran:  Five miles.   It’s been so infrequent I don’t even remember to mention it here.   For the longest time it was a daily thing, listing what sort of exercise I did.   With an upcoming marathon I suppose I’d better get to training though.

Wednesday, August 16, 2017

The Golden Sharpie

My son likes pens and pencils that are silver and gold.   There is a strong possibility this is connected to the silver and gold Power Rangers or maybe NinjaGo characters or Transformers.   Either way, he loves  metallic colors.

Last night we were working on some braille words and numbers with my daughter which is very interesting and worthy of a blog post or two because it’s another world from the reading we do as sighted people.    During the time my husband and I were working with her, my son was drawing with a gold sharpie on a piece of paper.   He had all these symbols he made up indicating powers of certain animals and forces of nature.   It was pretty impressive how many he did and how specific he was with what each meant.

He had gold all over his hands but I didn’t think much of it because it wasn’t long ago that my daughter got paint and marker all over her face in her attempts to draw and see what she was doing from one inch away from the paper.  Then at the end of his drawing he started wielding the pen as a sword at the table.    Again, thought nothing of it and we shuffled them off to bed.

Then, this morning I walked out into the living room to what looked like blood spatter trails across the wall paint and all over the floor.   Sharpie spatter.   Everywhere.   Did I mention Sharpie?  Yeah…apparently he was having more imaginary battles with the Sharpie and it was leaking through the back of the pen.

My husband and I spent a good bit of time with acetone and q-tips getting what we could off some of the surfaces, complaining how the gold massacre of the living room went on and on.   Unfortunately we’re going to have to repaint some.   Strict rules have been implemented so that ink-based implements are no longer allowed to be wielded as weapons.

The Big Boy Update:  My son went shopping with our sitter and picked out t-shirts for him and his sister.   He selected one that said, “Snaccident: when you accidentally eat all the bacon”.   For him, fitting.

The Tiny Girl Chronicles:  Our sitter had a day with my daughter a while back.   They did some painting in her garage.   Some really great paintings on real canvas.   My husband picked one of his favorites and had it framed.   My daughter liked it so much she’s decided she wants all her artwork framed.


Tuesday, August 15, 2017

Anniversary Present

My anniversary with my husband is in a few months.   He’s decided a good present would be a pinball machine.   And actually, that sounds like a great present if you’re asking me, which he was I suppose.   But we have a problem if we do decide to go that route which is where to put it.  

We have one machine already which is fun (although I rarely play it).   He’s been working on updating our arcade machine to have ten-thousand video games—all old, using various emulators to make them run on a little tiny thing called a Raspberry Pie computer that fits in the palm of your hand.   But that’s not where we’re running into space constraints.

So what we’re looking at is rearranging our mechanical room to serve multiple purposes.  The first will be a location for a pinball machine (or second one in our case) and other things as yet to be determined. I also suggested we change half of it into a workshop for him so he can do the tinkering he likes to do.

Today we started.   This was great for me because I like getting rid of things, moving things to other locations if they’re infrequently used and just organizing the space overall.   This was less than comfortable for my husband because I was messing with his stuff in a faster than he was prepared for fashion.   But I don’t move slowly when I’m organizing.

We made progress and hopefully by next week we’ll have a workspace and cleared space for future additions.   Then maybe we’ll decide if a pinball machine is really what we (he?) wants for an anniversary present.

The Big Boy Update:  My husband is a very laid-back, mellow guy which apparently didn’t suit my son because he said today, “dad, you’re getting boring.  I want you to be more excited.”

The Tiny Girl Chronicles:  We lost my daughter’s favorite stuffed animal for about a week.   Last night my daughter came out of the bedroom after lights out and called down to me, “good news, I found Hermione.  She was under my pillow the whole time.”

Monday, August 14, 2017

Homework

We got homework for the first time today for either of the children.   Montessori philosophy is that time out of school should be spent on other things such as building social or other skills and so neither of my children have ever had anything brought home as an assignment they were required to do.

Today we got this little stack of red cards with a hole punched in them and hooked together with a ring clip.    And there were instructions.   This was the start of the Rainbow Wall work (insert “yay!” here).  Each week students would have another color of sight words to learn, with this week being the red cards.   The words are very common and should be easy to recognize—and there were only a few.   We had ‘a’, ‘to’, ‘in’, ‘is’, ‘the’ and ‘that’.

You’re supposed to practice at home (they also practice at school) to learn them.   But there’s a catch.   You get tested at the end of the week, hopefully not in front of your peers, to see if you’ve learned the words.   If you have, you get your name up on the Rainbow Wall (insert “woo!” here).   If you haven’t you work on the set for the next week as well.

But wait, there’s more!  If you master the words for your test, you get special privileges for the next week.   There was a large list of them to accommodate a lot of students doing well.   So there’s incentive, which is good.

But dang, people, that’s pressure.   What if my child can’t master the words and then gets upset because she’s not on the Rainbow Wall and all her friends are getting special privileges and as parents we feel badly because we’re not drilling enough at night?   GAH.

Okay, I’m not worried and neither will my daughter, knowing her.  But it is an entirely different model from what we’ve experienced in Montessori.

But let’s get back to my daughter.   “Sight Words”—did you catch that?   Yeah, we’re not doing that.   What we get to do are, “Touch Words”?   I don’t know the name for the same thing but in braille but you get my point.   The list of words came home for my daughter just like they did for the other students only hers had the addition of the words braille at the top of each card.   It was really nifty looking.   This was something manually done just for her.

So I sat down to practice with my daughter tonight.  The ensuing screaming and resisting until she started to be successful and then didn’t want to stop I can cover later, but I do want to talk about how it’s different from practicing words with a sighted child.

My son and I used to practice his letters while he was eating.   It was the perfect time to get him interested.   With braille you have to use your hands to do the reading itself, and that means your hands can’t be doing other things like eating.    And they need to be clean.   If you’re reading cooking instructions and add the eggs and flour and get some on you you have to clean and dry your hands so you can go back to the raised paper medium you’re reading from to find out the next step.

It was something I hadn’t thought about before.   Especially the whole clean hands thing—that’s going to be a fun challenge with my daughter, I’m sure.

The Big Boy Update:  My son went to his first Parkour class tonight.  He loved it.   He came home bouncing around.   He was ready to go at nine o’clock this morning.   He’s going to teach his sister some of the moves I think; I know she’ll like that.

The Tiny Girl Chronicles:  My daughter desperately wants to “do flips”.   She wants to take a gymnastics class very much.   There is a free gymnastics class for the blind at one of the local gyms but it’s during her school day now so we’ll see if we can find another alternative.

Sunday, August 13, 2017

LaundrAll

I don’t know if there’s a product that does this, but it would be nice.   We do laundry a lot because we have children and children make a lot of dirty laundry.   At nighttime when we’re off peak I go into the laundry room, open the door to the washing machine and dump everything in.   Then I go to the kitchen and get the dirty white cloths bin full of cloths we use for everything from napkins to dish drying to cleaning up hazardous waste spills of red juice.   I put those on top of the clothes and then I get ready to run the load.

Now let me say first off that I’m lazy.   I don’t color separate because the children grow so fast and make such a mess on their clothes they’re worn out or ruined before they would be dulled by mixing colors and whites.   But I am willing to combat color bleed it a little with products.

I put in the detergent.   Then I add the fabric softener to a second spot.   Then I add in color-safe bleach to a third spot and then I add into the main area some OxyClean.   And for good measure I put in a Color Catcher sheet.    Then I start the load.

I’m sure there are reasons from cycle administration of products to incompatibility with products impacting shelf life, but I would pay a premium price if I could dump one thing in and be done.   The LaundrAll product.

The Big Boy Update:  My son likes to wear his headphones even when he’s not using his iPad.  Sometimes he’ll wear them around for half a day or more.   A friend commented the other night, “I think those headphones are attached to him.”   We didn’t know he’d been listening until about a minute later when he turned around with a devious grin and said, “my headphones are attached to me.”

The Tiny Girl Chronicles:  We’re going to be losing our sitter in a week as she heads back to college.   The children have had fun doing all sorts of things with her, today even making chocolate chip cookies at her house.    As Morgan dropped them off for dinner tonight my daughter told her goodbye several times.   She shut the door and then reopened it saying, “see ya later alligator.  After awhile crocodile.  Bye-bye best friend.”

Saturday, August 12, 2017

Family Movie Night

A lot of families we know have family movie night from time to time.   Usually it’s on the weekend so the children can stay up later.   We’ve done this in the past.   I remember watching Frozen with the children a little over two years ago.   But then we had to stop.   It’s hard to have family movie night when one of the members of the family won’t enjoy it because they can’t see it.

That’s not to say we don’t do things as a family, but there are a lot of things that aren’t challenging when you can’t see.   Board games are out.   Card games, same thing.   Craft or experiment activities are fun but they have to be of the kind that don’t require “seeing” what the result is.   For instance, we did an acid test experiment a while back with litmus paper.   My son loved it.  My daughter didn’t hate it, quite the contrary, she had a good time helping come up with things to test, but it wasn’t that engaging to her and when we were done she wanted to know what we could do with her now.

That’s not to say our situation is unique; there are families with children who are significantly different in age who might not enjoy the same movie together.    But it was something we had once and lost.   It’s something people with children commonly do that we can’t.   Or can we?

Before my daughter had her cataract removed and the subsequent hematoma and additional retina detachment, she could look at her iPad and watch movies.    We tried her with the iPad and us with the movie on the television simultaneously streamed, but she wasn’t interested and switched to playing games a few minutes in.

Now there’s been a change though—she listens to things.   She didn’t like doing this before because she wanted to use the residual vision any time she could, so trying to see something on the television above the fireplace or in a chair right up against the screen in the bonus room was okay, but frustrating because she couldn’t get in the whole picture.   It was frustrating for everyone else too because her body was in front of the screen and we couldn’t see.  

We tried to get her to just listen but she resisted.   Only now she doesn’t have a choice and she’s starting to get used to it.   She will lie down, commonly in the fetal position, and very quietly listen to what’s on.   So I asked tonight when we were having dinner if anyone wanted to have family movie night tonight.   My daughter was the first to say yes, followed by my son.   As I was about to ask my husband what movie we might consider suggesting my son yelled out, “Big Hero 6” followed by my daughter replying with an enthusiastic, “yes!”

So that was settled.    My children are now watching (and listening) to the movie.   I know, I know, it’s not family movie night if I’m down here typing away on the computer, but I’ll get there before the movie is over.  

The Big Boy Update:  The children went to the pool with our sitter today.   I asked my son if he had fun at the pool while we were eating dinner.   He stopped, pulled up his shirt and pointed and said, “this nipple stings.   It still stings.”   Then he went back to his meal as though that explained everything.

The Tiny Girl Chronicles:  It was time to get my daughter’s hair cut.   She didn’t want to but her bangs were interfering with her line of questionable sight and so it had to be done.   I decided to distract her so she would sit still for the hair cut.   I gave her bubble gum.    On the way in I popped my gum, knowing she wanted to know how to do it.   When we got to the salon she asked me how to blow a bubble and I gave her some instructions.   For the entire haircut she was working on making a bubble.   She hasn’t succeeded yet but knowing her, she’ll keep on trying until she does.

Friday, August 11, 2017

But It Tastes Good…

Children aren’t familiar with the social conventions we know as adults.   They do what they want and they don’t care.   They don’t care because they lack the knowledge to be embarrassed.    For instance, my daughter came into the living room the other morning after hunting me down in the bathroom.   She informed them, “Mom will be out as soon as she’s done wiping”.  

My son was in the bedroom on the floor the other day.   I was telling him it was time to get his shoes on so we could leave.    As I did this he absentmindedly picked his nose and then, after looking at what he’d gleaned from his nostril, put his finger into his mouth.

I didn’t get mad at him because honestly, he could have made a different choice that I might have liked less such as rubbing it on the carpet or bed.   But I told him, “In general, we don’t typically eat what comes out of our nose.”   We’ve talked about this before but it hasn’t come up in a while.   He looked at me with confusion and said, “but it tastes good”.

And this is a hard thing to argue with.   I mean, perhaps it does to him.   We had a conversation about how it would be better if he put any mucous on a tissue and then in the trash.   But that didn’t make sense to him either because that was a lot more work when eating it was so much simpler.   I said that was the way it was and he could work on it in the future.    We’ll see if he remembers.

The Big Boy Update:  The iPad location rules are working.   My son finally remembers he can only use it in one location—the sofa in the living room.    This morning he needed help and was calling for us.   I told him to come into the bedroom and I’d help him.    He called out, “but I can’t leave the couch with the iPad!”

The Tiny Girl Chronicles:  My daughter and our friend Jen were talking tonight.   I missed most of the conversation but I overheard my daughter say, “I don’t know what dad does with all his time.   He doesn’t know my life and I don’t know his life.”

Thursday, August 10, 2017

This Is Sometimes Embarassing

My daughter, without going into details was distraught tonight.   Let me sum up: she wanted to tell a story at bedtime but was so busy crying because she won the right to go first through a, “who can get the closest to the number I’m thinking of” that she used up most of her story-telling time allotment.

My son came down from the top bunk to do what I suspected was, “nosey wosey” on her.   He came up to her and she accepted his help, grabbing onto her nose and saying, “honk”.   As she laughed he looked over at me and said, “this is sometimes embarrassing”.

He’s started to show a very kind side lately.   When he got back in his bunk he said, “I know, you can sing a song to us”.   I said that I loved the songs she made up and he agreed, saying, “I love them too”.   This isn’t the son from six months ago, it’s a kinder child who didn’t complain while he had his turn telling his bedtime story (about the made up Pokemon-type creatures he’d invented) while his sister rolled around on the floor and wailed.  

The Big Boy Update:   Speaking of embarrassing, my son was playing with my husband this morning, poking and hitting him.   I heard my husband say, “ouch, that hurt!”  My son said in a chiding tone, “I only used two fingers.   That’s embarrassing”.

The Tiny Girl Chronicles:  My daughter is learning the alphabet sounds (which she knows already from her prior school) via a song for each letter.    She’s been singing them for us all week.   She can’t see what the other students are doing but you can bet she’s getting every one of the songs memorized though.

Wednesday, August 9, 2017

Plastic Bags

I have a lot of plastic bags.   Options, sizes, shapes.   I like to have the right size bag to fit whatever I want to put into it.  Today I got more bags.  

I think my love of bags started back in the 1980’s when my mother, father, the president of the college I would eventually go to and his wife created a software company.   They developed a program called SnapGraph (not sure if it was one or two words) in the language BASIC and produced it on a 5 1/4” floppy disk.   They printed out some instructions on how to use the graph program in DOS.   And then they got some plastic bags to put the product in.

These were the most interesting plastic bags I’d ever seen.   They were thicker than any bags I’d seen before.   The zip locking at the top was sturdier than other bags by far and they were a good size for a lot of things.  

They ended up having a lot more bags than they needed and they gave me some to use.   I still have some today, although they’re degraded in part so the zip locking part fails after a few uses, but I can’t bear to get rid of them.

So I collect plastic bags of all different sizes.  I have them as small as 1”x1/5” up to huge.    One of my favorite sizes is 4”x4” and I’ve been out for a good while.   We put candy pieces in it when we make it and it seems to be just useful for a lot of things.  

So today I got a thousand 4”x4” six mil bags.  Six mil being the thickness, which is quite thick, conveniently the same thickness as the bags I’ve been keeping around since the 1980’s.

The Big Boy Update:  My daughter has the number two cubby at school in her class.   When my son saw it the other day he was excited and came over to tell me about it.   I didn’t know what he was talking about until I remembered the chant he and his sister say: “first is the worst, second is the best, third is the one with the treasure chest”

The Tiny Girl Chronicles:  We were going into the craft room the other day after dark.   I mentioned we needed to turn on the light and my daughter said, “let me show you where the switch is” and found it with ease, remembering where and how high up it was in that room.

Tuesday, August 8, 2017

When I Can’t Be Myself

I had a friend who was going through a rough patch the last two days.    We texted.   We talked on the phone.   We wanted to get together but schedules wouldn’t allow, so we did what we could.   We even FaceTimed, which I’m not a big fan of for general phone conversations, especially when they might involve crying and as this was a tough situation, there was that distinct possibility.

Everything is resolved and fine now but at one point I got worried because the messages I was getting didn’t sound like my friend at all.   There was a level of extremeness to them.   There was an edge of desperation and I was concerned because while we all are under stress at certain points of our life, our coping mechanisms typically help us through them.   But this seemed bad, it seemed beyond stress entering into the irrational.

So when we got on the phone (after I said cut it out with the FaceTime nonsense because I can only hold a six inch phone out in front of me for so long) I got serious.   I got stern.   I went to a level of forcefulness I hadn’t done before.   To some friends, this wouldn’t have been taken well, but my friend listened.   I said, “this isn’t you.   This wasn’t you two days ago and this has never been you.  You need to give your brain a break because it’s been perseverating so long over the situation you can’t see clearly anymore.”

I think it helped.   I didn’t lose a friend, instead I was told something I would have never expected to hear.   She said to me, “thank you.   Thank you for being the friend I needed right now.   Sometimes when things are very bad I need someone to be me when I can’t be myself.”    It was so touching, especially when I felt like all I’d done was to be critical instead of being supportive.   I suppose in retrospect I thought the best way to be supportive was to be assertive and opinionated than just a listening ear.

I took it as a great compliment.   I’m fortunate to have a close friend who would turn to me—opinionated as I am—when she has a need.

The Big Boy Update:  Today was the first day my son remembered—for the entire day—to not move his iPad from the one spot he’s allowed to have it.   He can’t have it all day, but when he can, there is only one spot it’s allowed.   It’s a soft spot, otherwise known as a sofa, which reduces the risk for breakage drastically.   It’s also teaching him to take breaks to do things more easily.   He doesn’t like to transition from one thing to another so it’s been helpful in that small way as well.

The Tiny Girl Chronicles:  My daughter rode to school in a van today.   Her school is very far away from all the other students because she’s not in that school district but has been assigned there because it has a VI specialty.   She liked her driver, Ali, and met a new friend on the ride home.   They sang songs and played counting games she said.    She’s looking forward to the ride tomorrow she said.

Monday, August 7, 2017

Tomato Drills

Today was my daughter’s first day of kindergarten with her full class.   We’ve been hoping for a positive experience but we know children don’t always respond the way you hope they will, even if you’ve prepared them for it in the best manner you can.    This morning my husband took my daughter to school and dropped her off so he could get some administration things completed at the office.   As he left her she seemed happy.

Immediately after school, which is a long day of new things, we had a play therapy session scheduled.   Dhruti was worried it would be too much for one day but when my daughter got in the car the first thing she said was, “Dhruti!” so I texted Dhruti to say we were a go and we’d be there shortly.    Then, for the rest of the ride home, my daughter told me all about her day.   And it was all positive.

The first thing she told me about were the “tomato drills” they were going to have.   I didn’t know what she was talking about until she explained further there were also fire drills and lockdown drills.   I asked her if she thought they might have meant tornado drills to which she said, “oh, yeah, tornado drills”.   With that cleared up she told me about the envelopes.

In her backpack there was a red envelope.   That one “goes home straight”.   The green folder she said goes home every day and comes back to school (parent communications and student work).   They have a rest time each day for the first track of nine weeks on a towel but my daughter doesn’t nap and hasn’t for over four years now with rare exception.   She said, “everyone was just lying on their bed talking”.  

She told me during that time she got to work directly with her teacher on two braille books.   She, and the other visually impaired student, Aditi, took turns with the teacher with my daughter getting to have more time (which she was pretty happy about).   Then she said, “do you want to hear about the specials we had?”   She told me the special from last week was P.E. but that today they had art as their special.

I asked her about her lunch, which she was looking forward to.   This morning we had the lunch menu for the month printed out and she picked out what she wanted for the first three days.   Today she told me she had pizza, warm carrots (cooked), mandarin oranges, an apple and chocolate milk.   She explained how she didn’t eat all of it and decided to bring home the partially eaten apple in her backpack.

I asked her how she ordered the food.   She told me they got to have a tray and one of the helpers, “Miss Redwine” helped her.   Folks, I’ve looked over the teacher and assistant list and I didn’t see anyone named Miss Redwine but she seemed pretty confident about her name.

Tomorrow she’s looking forward to meeting Ali, her bus (or van) driver, who will be taking her to and from school.   I hope she likes him and the ride just as much.   He does not speak English well so we’ll see how he fares with her wanting to play word-based games with him in the car all the way to and from school.

The Big Boy Update:  After my daughter went to school I took my cousin and her family to the airport. They’d spent the night with us and were leaving for a big swim meet in New York.   My son sat in the third row with one seat folded down to accommodate luggage.    As we were half-way out of the neighborhood we heard my son say in a muffled voice from the back, “suitcase!”   We looked back to see a large hard-case suitcase completely covering him.   He wasn’t alarmed and probably because of that we all started laughing.   He was so great about it, realizing it was a funny situation not that we were laughing at him.   Uncle Dale rearranged the bags and put a pillow between him and the luggage for protection and we were on our way.   We hope Olivia swims well in the meet in New York this week!

The Tiny Girl Chronicles:  My daughter was making up a game in the car as we rode home today.   She was trying to help me with a mental image so she said, “imagine we’re in a huge, huge garden where the only thing is grass…”

Sunday, August 6, 2017

I Think I’m Going To Try To Go

My son has had an issue lately with taking a break from what he’s doing to go to the bathroom.   And this has caused some issues…in his pants.   As you might well imagine, no one is pleased when this happens.

We’re working on logical consequences for when this happens.   We’ve had him wash his underwear out, which he hates.   This takes a long time with adult supervision and a lot of angst on his part.   It’s more a matter of getting him to realize he needs to take a break from what he’s doing (he gets really focused) to stop and go.

We hear this is all normal for his age, and yet we don’t like it.   He doesn’t like it and doesn’t want anyone to know, which we’re trying to respect.   We’ve come up with a plan he doesn’t like, and that’s a good thing; we’re making him sit on the toilet from time to time with nothing to entertain himself with to see if he can go.  

The other day he ran into the bathroom, passing me on the way saying, “I think I’m going to try”.   Hopefully this will work because my husband, son and I are all tired of the current situation.

The Big Boy Update:  This morning my son came down and as usual I said, “hi, I’m so happy to see you this morning.”   He usually gives me a gruff look and doesn’t say anything because he’s not quite ready for it to be morning yet.   This morning he looked at me and then said, “It’s good to see you.   It’s wonderful to see you.”

The Tiny Girl Chronicles:  My daughter spent the weekend with her grandparents.   She had a fantastic time from the pictures and texts they sent.   But she was thinking about us.   On Saturday at dinner she told Nana and Papa, “I wonder how my brother is doing?”

Saturday, August 5, 2017

Headache Launch

I have a migraine.  I don’t get them often but when I do I dislike them.   So I’m making this short tonight.  

We went to a launch party tonight for a new vodka one of our neighbors has been developing with his company.  It was a serious event.   Serious is scale and serious in fun.   My feet are sore from standing around in heels (which I don’t wear a lot) but my husband and I had a good time.

The Big Boy Update:  My son went to a birthday party today.  On the positive side, it was a very fun party.  On the sad side, the mother has bone cancer.   I haven’t seen her in over a year and when we got there I saw a wheelchair inside and wondered if she would make it out to the party.   A while later their grandmother, who was moving around slowly with a rolling walker was talking to the nanny—only it wasn’t the grandmother, it was their mother.   She was almost unrecognizable.   But she said the treatment was working and she was getting a lot better.   On the cute side, my son was very shy when we got there, hiding in his shirt until he was ready to get in the inflatable pools in the front yard.


The Tiny Girl Chronicles:  My daughter is visiting Nana and Papa this weekend for some special time with them.   She was at the pool today and didn’t ever want to stop going down the spiral slide.   She didn’t forget about us though, saying next time she wanted her whole family to visit so they could have fun too.

Friday, August 4, 2017

GIVE IT BACK TO THE STORE!

If the title of this post sounds like I’m yelling at you, then you’re getting the tone correct.   That was said to us, multiple times today, by my son.   But before we get to that line, let me catch you up…

My son loves his iPad.   He loves spending time on it.   He’s learned some pretty interesting things on it, has mastered some skills and can use words and phrases that make him sound impressive even though he’s just repeating them from something he’s played or watched.   We limit the time he’s allowed on the iPad but if you’re visiting us on vacation or the weekend you might think us bad parents because those are the times he’s allowed to have it.

There have been “incidents” with the iPad.   Namely screen breaks and dents.   And we could have prevented them I am most certain but for the most part my son is careful.   But mistakes happen and hey, I just dropped my cell phone in the toilet so I can’t really talk about being one-hundred percent careful because I’m clumsy and frequently irresponsible.

My son most recently has had very stringent rules on where and how he can use his iPad.   He’s been okay with that (barring a few forgetful incidents).   But a new issue arrived—his case, my husband’s old case since it was my husband’s old iPad, was falling apart.   So we had to get him a new one.

My husband went out today to run errands and got my son a more sturdy case, similar but different to the old case and we thought (incorrectly) the case with the new features would be received positively.   Sometimes my son handles things well, but he dislikes change, especially when he hasn’t been prepared for it in advance.

My son was inconsolable.   So much so that he didn’t even want to use the iPad.  It had been tainted by the new case.   He tried to tear off the old case multiple times saying, “give it back to the store!”   He laid on the floor and moaned and wailed.    We were firm.  I tried to be understanding and then I asked him why he didn’t like the new case.   And it boiled down to change.

The took the old case (which he was holding on to with a death grip) was fuzzy on the inside he showed me.   And the new case wasn’t.   The old case folded three times to prop up the iPad and the new case did the same thing, but in a different way.  Also, the old case had the Apple symbol on it and, “I like Apple things”.   He just didn’t like the new case.

But the old case wasn’t keeping the iPad held in place and was falling off, we told him.   That didn’t matter.  He said. “I’m not going to give Daddy a Christmas present or a birthday present or any other presents from him ever again.”

It was time to go to the pool so we told him we’d keep the iPad until he was ready.   And he didn’t like that either.   But when he got home later this afternoon he had thought about it and I guess had processed the change because he said, “I think I do want to use the iPad with the new case, mom.”    Next time we’re going to have to remember to prepare him for change in advance.

The Big Boy Update:  My son likes to tell his friends what to do.  Sometimes they don’t like it at all but yesterday he had them doing chores he told me.   One of his friends was sweeping the floor and the four-year-old was dusting the dining room table off with the feather duster.  They all did such a good job they each got pompoms for helping out around the house with chores.   Interestingly enough, I didn’t even know my son knew where the duster was.

The Tiny Girl Chronicles:  I was explaining how my daughter had half of something.   I said if you had two halfs then you would have one whole thing like two halfs of a pie.   She said, “yeah, you could glue the two pie halfs together and then it would taste disgusting.”

Thursday, August 3, 2017

Marbles

Tonight’s blog post was written by (well, dictated by) my daughter, who said she wants to help me with my writing.  

Today we went to the science museum, Marbles.  Here comes’s the fun part, right?  The first thing we did at the museum was having fun playing with some blocks.   And today there were some new blocks there.   The thing I wanted to tell you about the new blocks were big, long stripes without holes on the sides.  There were big ones and little ones, long ones and short ones (is the right thing to say, actually).

And then when we got bored my brother ran up ahead of the museum.  So then Morgan and me (Morgan is our baby sitter) went together and found him playing a game chess.   But he wasn’t playing the game right.  We kept setting up the things and kicking them down, but then Morgan told my brother how to do the game while I was setting the white ones up and knocking them over.  Then I learned how to play the game and the first time I won.  Morgan was on my team so she won too.

Then we went somewhere else.  My brother went on ahead while me and Morgan were being slow-pokes.  We went up the stairs to the truck and then went inside it and then we went down the slide at the other side of the truck.  Morgan went through the gate and met us at the grocery store.   We bought things and then some more things and then I made my vegetable soup and then left.

While me and Morgan were making my pretend soup my brother hurt his head and it sounded really bad and so Morgan gave Greyson some hugs.   And then we went down the fire pole and went to someplace else.    My brother got to pick the next place and he picked the sports room.

First of all, I did some hopping stone things.  I wanted to do the monkey bars but they weren’t available so I did the ladders and then I swing on the rings.    Then we went to the pull chairs and after Morgan clipped me on I pulled myself up but it was so hard I needed help so Morgan and I did it together and then it was easy.   When we let go I went down.   Then another girl wanted to go on it.

Then I wanted to go to the wobbly things like surfboards but they were too wobbly for me and then we decided to go to the ball pit because I found a ball that went there.   We put the ball in the ball pit and played a little basket ball.   Then we went to the electricity room with and all the round discs and the winder things you wind it up with.

After that we went to the car place where we make the cars and roll them down the hill.  At first I made mine but it was too big.   My brother helped me make a car the right size.    Then we decided it was time to go get our snacks.   The snacks we got were kitkats and M&Ms.  We drank some water and Gatorade and I had a just a few pretzels.

Then after that we left to go to the car and go to lunch at Chick-Fil-A.  We had a fun day at Marbles.  So…after that when we got home I was so happy I said, “the end, my story’s over.”

If you’ve ever been to the children’s museum, Marbles, everything in the post above makes sense.  It’s a bit harder to follow without the frame of reference of the physical areas of the museum however.

The Big Boy Update:  My son has been four days without his iPad after I found him standing on the counter, opening cabinet doors and removing a bowl, while watching his iPad in his other hand and not paying much attention to his surroundings.   Note that that is in no way allowed so when I took the iPad away he knew it was bad.   He’s been calmly asking and today, after four days of summer vacation (they don’t get the iPads during school weeks) I told him I would discuss it with dad.   His new rule is he may pick one place and only place only to use the iPad.  It can only be used in that one spot.   If it moves, it’s gone.   He wants to pick the chair his sister uses all the time but he’s aware if there are usage conflicts he won’t get to use the iPad.   He’s thinking about the sofa but isn’t sure.   Tomorrow we’ll see if he’s made a decision and if he can keep his usage tethered to that spot going forward.

The Tiny Girl Blog Post Writer:  My daughter wanted to help tonight so I asked her if she wanted to write the blog post for the day.    She’s fairly clear-thinking and can tell a straightforward story so with very little in the way of stopping to ask her what happened next and a few times of, “hold on, you’re going to fast” I was able to get the above down.   I had to cut her off though—she could have gone on about the entire rest of her day in detail.   She remembers so many details.

Wednesday, August 2, 2017

Change is Hard

My daughter’s first day of school yesterday went without incident—at the time.   After she came home it was a different story, including and into today.   It’s largely due to change for one small person all at once.   My daughter’s situation isn’t any more unique than any other child who finds themselves in a new school, a new classroom, a new city, with a new sitter or in a new house.   Change can be tough to adapt to.  

As adults we’ve had our nose rubbed in so much change we’re used to it.   We may not like it but we understand it’s how life is.   A child doesn’t have the breadth of experience and has no control most if not all of the change and process associated with it.    And that lack of control can manifest itself in erratic behavior.

My daughter was very happy about her first day and then once she got home and was back in her normal home environment she became exceptionally irritable, atypically whiny and even threw in a temper tantrum of lengthy proportion to try and manage the chaos going through her mind.

This morning she wasn’t in any better mood and had to be taken back upstairs because not only was she being whiny, she was being completely irrational.   A child, irrational, you ask in a completely sarcastic tone?   This was just not her, not my daughter, not her even-tempered self.

What she’s going through is common, expected almost—we’ve been told by our teachers in prior years to not be surprised if it takes weeks to get adjusted to the new school year and routine.   We’ll see how my son adjusts to his new classroom and teachers when he starts school at the end of August.

The Big Boy Update:  I had finished reading a book last night and had turned out the light.   Typically I climb the steps up to his bunk to give him a hug and a kiss.   Last night he said, “I’ll pass”.    So I squeezed his hand and went to the bottom bunk to see if I could help his sister who had just finished a pretty atypical and protracted tantrum.   Maybe he figured she needed a hug more than he did right then.

The Tiny Girl Chronicles:  My daughter asked me, “what does p-n-s spell?”  I told her it sounded like ‘penis’.   She then said, “that’s not a good word.   I think you should only say it when you’re on the toilet with the door shut.”   (Interesting, because she and her brother have been saying that word in an anatomical sense since they were quite tiny.)

Tuesday, August 1, 2017

First Day of Kindergarten

Today was, “staggered rollout” for my daughter for her kindergarten class in her new school in the next city over.   It’s been a long and hard decision for us to send her to a different school.  Ultimately we had very little choice as her vision continued to decline despite the surgeries, drops, glasses and help from our entire medical team.

We were hoping to make the experience of transitioning to a new school a positive one, knowing that change can be scary for children.   My daughter has been excited to go to a new school where she has another blind friend in her class.   She also is looking forward to eating at the cafeteria, moving on from the packed lunches I’ve been making for the last few years.

We checked in at the front office with my son in tow.   He had been to a walkthrough of the school before and was pretty much feeling at home.    After getting our visitor badges we went to my daughter’s classroom and met her teacher, assistant teacher, braillest, and VI teacher.   My daughter worked with her teacher to find her cubby and put her backpack away.

The adults got to talking, mostly because we’d never met any of her teachers before.  They were interested in what level of vision she had and how she had lost her vision.    In a few minutes we realized my son and daughter weren’t even around—they had found some Duplo blocks.   My daughter had built something while my son had built a transforming sword.

We extracted my son and without even saying goodbye because my daughter was happily engaged, we left to go to the VI room to speak more with the teachers there.   After finding out some basics from them we headed to the office to pick up our carpool line tags to hang from the rearview mirror so when we pulled up to pick up my daughter, they would know which child went with our car.   And then we left my daughter who hadn’t even noticed we’d left, until pickup this afternoon.

When we picked her up we were greeted by her orientation and mobility teacher and her braillest.   They said she had a very good first day and we had a few quick comments about plans for the first day of school on Monday and also, what kind of car was this that had the doors open upwards?

When my daughter got in the car we asked her about school.   She was happy, she was effusive.  She told us she met a new friend named Jonathan.   That the chairs in the cafeteria had no backs and the seats were round and were attached from underneath.   She did P.E and had fun and also, there is a bathroom and it has a sink and a toilet and toilet paper and the funny part is there is a water fountain attached to the sink you can drink from.

So it was a good day.   But she was mentally exhausted.   She turned into one of the crankiest, irrational versions of her I’ve seen in a long time.   I couldn’t get her to sleep and she didn’t want to eat so we just worked through it until her friends came over and she went out to play.

She’s looking forward to going back on Monday for the main school year and seeing her other blind friend, Aditi, who shares the cubby beside her in the classroom.

The Big Boy Update:  Today while my husband and I were talking to the VI teachers at my daughter’s new school my son was bored.    He found a pencil and a post-it note stack and made eyes, a nose and a mouth and stuck each face part on his shirt, making a post-it face.    He told us, “this is ‘Face’”.    He, my son, wasn’t Face, it was the thing on his chest.    And he bonded with that ‘Face’ for several hours.   He was particularly upset because he didn’t want to hurt Face by putting the seat belt across him.  

The Tiny Girl Chronicles:  We were getting ready for the first day of school this morning and I was scrambling.   I was trying to get my daughter to brush her hair while I cleaned her glasses.    I was partly exasperated when she said to me, “mom, didn’t you forget something?”   I really didn’t want to play games at that moment but immediately felt bad when my daughter held up the drops (which I’d been looking for) and said, “we didn’t do drops, mom”.

Exercise:  I ran seven miles.   I’d say more like, “wow, amazing, I didn’t think you remembered how, are you sore, etc.” but I think you already know I’m erratic in my exercising and usually it’s my running buddy to blame when I do get around to doing something.   Today she was the cause again.   And I thank her for that.