Thursday, June 30, 2016

The Unknown Ringtone

A cell phone ring tone can make a statement about a person.   Some people select one of the included tones that come with their phones.   Other people never even change from the initial default ring tone.   Then there are other people who go to the opposite extreme, having a custom ring tone with specific tones for certain callers.

I’ve had problems with ring tones over the years.   Mostly the problem was one of negative reinforcement.   This goes back to before I had children and was working a job that while exciting, was also high stress.   The calls to my cell phone were mostly for work and were usually unpredictable.   Did one of my instructors arrive on-site with no classroom materials and un-imaged classroom machines?   Had one of our sales team sold a course that didn’t exist to an important client?   Or was it an employee who had found a job that didn’t require eighty percent travel and had decided to resign in two weeks, even though we’d booked him out for the next two months?

It wasn’t all bad, but sometimes it was, and all it takes is those sometimes that make you dread the phone ringing.   I would change my ring tone every so often because I just couldn’t take the current ring tone any more.    That was then though and this is now.   My stress level is of an altogether different sort.  Yes, we have our challenges, but on the whole, I don’t mind when my phone rings.   Usually, it’s someone I even want to talk to.

But I still like to change my ring tone from time to time just for fun.   One of my favorites has been the Close Encounters of the Third Kind theme, which is both eerie and hopeful.   Recently though I was re-watching a favorite television show from a few years back and I realized the short theme song would make a perfect ring tone.   It was very distinctive and beautiful.   I changed my ring and wondered how many other fans of the television show I’d discover from having the theme song as my ring tone.

It’s close to six months later and not one person has recognized the theme song.   No one has even asked about it, saying it was familiar but they couldn’t place it.   I thought the show was popular and was disappointed when it was cancelled after five years, but maybe it wasn’t as popular as I had thought.  

The Big Boy Update:  My son and I ate outside last night at a restaurant while my husband and daughter did their own thing together at home.  A beautiful black crow landed near our table and intently watched us and hopped around, hoping to get some food.   My son caused him to back off three different times because he stood up and held his arm straight out, towards the bird.   It wasn’t until the third time when I realized he was inviting the crow to land on his arm.    He had had a group of bird experts named “Claws” come to his classroom, bringing large birds to show them.   They each had an opportunity to have a black crow land on their arm so they could have their picture taken with it.   My son had watched his classmates each take their turn and then had had his turn.   We saw a picture of him with the crow but it wasn’t until I saw him putting his arm out in offering that I put together what happened in class that day.   When I asked him about it he told me he wanted it to land on him.   We had a talk about wild birds and then I suggested he share some fruit by throwing it on the ground, which our crow gladly accepted.

The Tiny Girl Chronicles:  I made quesadillas for my children for lunch.   My daughter was looking intently at one of the slices and told me, “I can see the brain of cheese in the middle.”   I asked her if that meant brains were inside, if she thought brains were made of cheese, if brains were the color yellow—basically a lot of leading questions—and got no help other than, “yeah.”

Wednesday, June 29, 2016

Writing Evaluation

The Big Boy Writing And Other Occupational Therapy Evaluation Updates:
That’s a long section title, maybe I could have come up with something snappier or more succinct but a long day coupled with a migraine headache and I’m all out of clever right now.

My daughter had the whole eye thing happen last year so we were worried she might need some professional help.  We met our now favorite play therapist and have been ever so happy to have her sage advice and guidance for my daughter and us as parents.   What we didn’t expect was to have a need to get some help for my son, but after understanding the complexity of things in play coupled with our ignorance about how the minds of children both develop and work, we have happily welcomed all the help we can get.

I’m going to cut to the end and say that aside from my daughter’s vision, nothing else seems to be a long-term, unfixable, catastrophic problem.   Hopefully her eyesight won’t be either, but it’s good to at least report the rest of our family issues are minor and easily addressed in comparison.

My son’s teachers suggested we look into some occupational therapy for him for two main reasons.  The first was he was struggling with his writing and was going to fall behind if he didn’t get some help at the pace he was going.   Second, he was having some issues controlling touching his friends in the classroom, not being able to concentrate and generally not being able to focus on working during classroom time as a result.   Was it sensorial?   They didn’t know but they knew someone who could evaluate him and help and she was already helping other students in their classroom.

Bethany, the OT specialist, observed our son a few days later and emailed us saying she could evaluate him, saying she saw an immature grasp and had observed the behavioral points his teachers had noticed during her other visits.   The only problem was, she was booked for months.    Once we got on her schedule—likely after school was out for the summer—we’d have a reserved time slot, only it was going to take a bit.

So we waited.    We heard from other parents who said, “oh yes, you should wait for Bethany, she helped <insert name of their cute child here> so much.”   In the meantime we had our son start seeing out play therapist, Dhruti, and found out he doesn’t have sensorial issues, he has self-image issues, compartmentalization issues and inexperienced parent issues.  We started working on those points and have been seeing good progress

I titled the post “Writing Evaluation” because that’s what we thought the bulk of what Bethany would be doing with our son after she evaluated him.   In the meantime we had him work on pencil grasp, writing and drawing and saw him improve quickly.   Then, this week he was finally officially evaluated by Bethany.   She talked to me while she had him do several things to determine if he had sensorial issues.    I can tell you this: when your child chooses the shaving cream work from all the toys in the the closet and then sprays it all over the mirror, wiping it all over himself in the process, you can be fairly certain he doesn’t have sensorial concerns.  

She did some neurological tests that looked like games to him and had him do some drawing and writing.  She saw his level of energy and said there were several children in his classroom that had similar issues “self-regulating”.    Her explanation was years ago we didn’t teach children how to calm themselves, get their energy out or prepare to do calm or quiet work because we weren’t as academically focused as we are today.   Self-regulation was a skill we typically figured our for ourselves when we got to college and had no choice but to find a solution when we had to cram for a test or write a paper.

She said her work with my son would be a combination of helping him know how he was feeling and what he could do to change his mental state.   On the whole writing front, she said he didn’t look to have any problems such as weakness or neurological issues and she thought he’d be able to catch up easily.

So basically no bad news, just things to work on and we have someone who can help us get there.   Bethany thought the work we were doing with Dhruti on the emotional side was a perfect division across their expertise the each had.    My son is already excited about writing.   Today we discovered that Lego and Nexo (two words he likes) have two of the same letters.

The Tiny Girl Chronicles:   We were in the car the other day talking about where we’ve lived.   My son lived in our prior house for one week before we moved to our current house.   My daughter wanted to know where she was.   We told her when we lived in the prior house she was just an egg to which my daughter replied, “what in the heck?”   My son jumped in, saying, “yeah, in Mommy’s belly.”  My daughter was now more alarmed, saying, “you mean where the food is?!”   She decided it was all okay though when my husband replied, “close to there, but in a different spot.”

Tuesday, June 28, 2016

Pluto is a Star

My son and our neighbor, Keira, wanted to watch a show about space today.   I was navigating around to the documentaries section of Netflix and my son called out, “that one!”  He was lured by the very colorful picture for the series, Cosmos, which was in fact a show about space, so I pulled it up and started watching it with the two children.

His friend is nine-years-old and knows a lot more about everything in compared to my son.   She can also read.    The two of them sat very close while the show started explaining our “cosmic address”.   It was interesting to hear the two of them speculate on what was on the screen.   Pictures of the Earth from orbit were declared, “The Arctic” followed by shots of the sun ablaze which they decided was Mars.

The planets were next.  My son loves the planets.   He has an old DVD called, The Planets, he likes to watch over and over and as a result he and his sister are pretty good with planet names and colors.   But Keira wanted to make sure he knew Pluto was no longer designated as a planet.   She told him, “Pluto isn’t a planet any more, it’s a star.”

My son thought this explanation was just fine and the two of them went on learning about the planets, solar system, galaxy and universe as they sat close together on the couch.

The Big Boy Update:  My son lost one of his favorite toys today—the Tubation.   He lost it and believes I have thrown it away forever because he was so very unkind I lost my temper and said it was being put in the trash.   I need more guidance as a parent because I can’t understand why he takes pleasure in saying what other people build is boring, stupid, <insert other derogatory or insulting comment> when he hates it when the same is done to him.    I’ve tried multiple avenues to foster grace, courtesy and compassion, but I’m having no luck.   It is on my list to talk about with his play therapist, because there’s probably more underlying the issue than I’m understanding.

The Tiny Girl Chronicles:  My daughter drew a pig the other day.   She told my mother her pig was, “piggietastic”.   She further said her pig was, “piggieperfect”.   It was a rather nice pig, so we kept the drawing.

Monday, June 27, 2016

Rug Removal

Have you ever experienced one of those moments when you realize you’ve been doing something for a long time, accepting it as the thing to do because you’ve always done it.   You don’t question why, because it just is the way things are done—then, suddenly one day you realize you’re not sure it should have ever been done that way.  

We were having dinner with some friends on Saturday night, talking about carpets, rugs, children making a mess, the usual.   We mentioned how we took for granted the dog’s ability to clean up crumbs.   There were conversations about rug cleaning and dining room tables and our hosts mentioned they didn’t have many rugs, just the one in the foyer.    It was then that something mentally whacked me in the side of the head.  (Imagine my mind whirring as you read this next bit.)

These friends didn’t have a rug under their dining room table.   They could simply sweep up the crumbs.   They didn’t have to worry about spills on the carpet from messy children because they could mop it up.    My best friend has no rug under their breakfast nook table…our other friends don’t have a rug under their dining room table…in fact, lots of people I know don’t have a rug under the table they eat at.     

It was then that I hit upon a great idea: get rid of the rug under our breakfast nook table.   Could I do it?   Would it work?   The rug was badly in need of a cleaning and with the dog on vacation with my mother-in-law, I was getting tired of sweeping/vacuuming.    I decided.   I was going to do it.    I told my husband and he said, “okay.”

This morning I moved the table and chairs to the side and with my husband’s help, moved the rug onto the covered porch.    It was going to sit there until either I cleaned it and put it back under the table or decided to roll it up and store it.  

I cleaned the floor, put sliding feet on the chairs so they’d move easily and sticky feet on the table legs so they’d stay in place.   Then I looked at the room and realized the tight six-person table we’d been sitting at for five years was only tight because I didn’t have the leaf in all the time.   Why didn’t I have the leaf in all the time?   Because the rug wasn’t long enough in that configuration.    

So I put in the leaf and then pushed in all the chairs at the same time—something that couldn’t be done without the leaf.   Then I stood back and evaluated the change in the room.   I was expecting it to look empty or different or less-colorful without the green rug, but it didn’t.   It looked better.   It looked more open and more spacious even.    

It was less than an hour later when the new configuration was put to the test.  Four children were hungry, wanting strawberries, blueberries and crackers.    I came back twenty minutes later to a table empty of children but covered with crumbs, strawberry “hair” (as my daughter calls the leaves) and blueberries.  The chairs and floor didn’t fare any better on the crumb front.    I went and got a single cloth and the broom. 

I brushed all the crumbs from the table and chairs onto the floor and pulled the chairs back.   Then I used a feature of our central vacuum system I’ve rarely used before.   We have a toe-kick opening under the cabinet connected to the central vacuum.   You simply sweep your debris over to the spot, kick the port open, sweep in to the loud, loud sucking sound of the unit running, kick the opening closed and put your broom away—no dustpan needed.   I think, after today’s carpet removal, I’ll be using that feature a lot more often. 

Tomorrow, I roll up the rug and put it in the attic.

The Big Boy Update:  My son had an evaluation with the occupational therapist we’ve been holding for since April.   She’s worked with other students in his class and has been highly recommended.   He very much liked her.   I’ll have to write up more details later, but the good news is he has no strength or coordination issues with his writing.   Bethany is going to work with him on how to help him know when his body is ready to work and if it’s not, what he can do about it.   She’s also going to work with his writing too, but she thinks he’ll do well with some guidance and skills to help himself.  

The Tiny Girl Chronicles:  My daughter can hardly see some things while other things she can see well.   We were headed out to dinner with my parents the other day in the mountains.   As we turned right off their street my daughter called out from the back seat, “guys, guys, you forgot to stop!  There was a sign that says stop!”   She was right, there was a stop sign.  

Sunday, June 26, 2016

Water Is Water Is Water

It was hot today and we ended up doing several things with the children which involved water.   I had suggested in the morning when they weren’t sure what to do that they could fill up the little plastic pool in the back yard.   This suggestion was met with a wholly unenthusiastic response so I let it drop.

Sometime later my daughter ran into the house, excited because her friend, Madison, was going to the pool and could we go too?   We scrambled to get ready and drove off to the pool we both have a membership to.   My children were interested in the water but decided they were more hungry than interested in the water so we left to go eat and I contemplated coming back after lunch.

After lunch I was met with requests of “can we go home now” because—and get this—they now wanted to play with water in the back yard.     We arrive home and I get not one, not even two but three little splash pools of different sizes configured (with their help) in the back yard.   We sprayed water on the slide with one of the pools at the base and they pulled a chair over so they could jump from the chair into the other medium-sized pool.

Satisfied I’d finally gotten them happily focused on something cool and watery on this hot day, I went inside.    I looked out five minutes later to see them playing some other games entirely with stuffed animals on the hill, completely ignoring the water.

Water wasn’t a draw today in the eighty-five degree weather; I wonder if it will be tomorrow?

The Big Boy Update:   I was trying to explain to my children how long it was until we’d be visiting their cousins in New Jersey.   After listening to my explanation my son said, “do you mean two months ’til after tomorrow it’s next week?”

The Tiny Girl Chronicles:  My daughter came inside this afternoon with a tiny, smushed something she proudly told me was a mushroom she found outside.   As I started to tell her it was a looking mushroom and not an eating mushroom she interrupted me and said, “this mushroom is poisonous, and, if you eat it, you are poisonous.”

Saturday, June 25, 2016

Mental Hygiene

I was reminded of a quote yesterday by one of my favorite authors, Robert A. Heinlein.   I had to look it up to remember it in full as it’s long.   It reminds me of the process we all go through in life and is something I try to keep in mind as we deal with the challenges of my daughter’s vision impairment:
Mental hygiene is a process of correcting the correctable and adjusting to the inevitable. You’ve got three options. You can keep going into a spin until your mind builds up a fantasy acceptable to your unconscious…a psychotic adjustment, what you would call ‘crazy’.  Or you can muddle along as you are, unhappy and not much use to yourself or others…and always with the possibility of skidding over the line.   Or you can dig into your own mind, get acquainted with it, find out what it really wants, show it what it can’t have and why, and strike a healthy bargain with it on the basis of what is possible. If you’ve got guts and gumption, you’ll try the last one. It won’t be easy.
The Big Boy Update:  My son’s favorite color is gold.   This is relatively new and correlates in some way to the Power Rangers in a way I have yet to understand.

The Tiny Girl Chronicles:  My daughter was looking at the fools gold she and her brother had found at the gem mine on Thursday.    She was holding several pieces in her hand when she suddenly said, “Mommy, look, it glimmers!”

Friday, June 24, 2016

Other People Can See

I’m suffering from an over-awareness problem.   This can happen to you when you have to be aware of something that historically, you never paid attention to, didn’t need to know, never cared about.   For example, my good friend has a daughter who was diagnosed with Type I diabetes some years ago.   I don’t know anything about blood sugar fluctuations, the amount of carbs in particular foods and all the hazards her daughter may face on a daily basis.   My friend does all these things without thinking, because she has to.

With my daughter’s reduced vision, I’ve become aware of the ground in a way I never would have expected to.   When my daughter’s walking with us she usually can tell when there is a change in elevation such as a curb or step, but not always.   Natural settings and low-contrast surfaces are more difficult for her to discern.   Without ever complaining, she moves across her world with very little difficulty.   The only worry is the times when she doesn’t see something that would cause her to fall or run into something which could injure her.   It’s those times that have caused me to be hyper aware of my environment.

When I’m with my daughter this is good: I watch for situations she might not see well and casually give her some advice just in time so she can be successful.   In some cases I just steer her away from dangerous obstacles and at other times I instruct her to stop or be careful as she approaches something like the edge of the lake with a drop-off at the edge hidden in the grass.

What also happens is through extrapolation, I watch out for every child around me.   I know my son and our other children friends can fine.  I am aware they are just as capable of seeing the environment around them so they can safely move through it, and yet I have a hard time not telling them, “there’s a step to your left”.

It’s nice to have this protective ability as a parent.   But in some ways I hate it.   I wish I’d never needed to have this extra awareness.    But wallowing in my disappointment doesn’t help; accepting what is and what can and can’t be is the only way to move forward—so I’m moving forward.  Did I mention my daughter was not only happy but cute as well?

The Big Boy Update:  My son is a rock collector.   He has been finding rocks from all around my parent’s yard, the gravel path, the parking lot and the rock garden at the restaurant.   He is dismayed when we explain he can’t take the large or many or dirty rocks into the car and home with him.   His collecting this weekend has been an extension of his collecting with his friends at home.   They’ve been digging up rocks on the clay hill for several days.   The location for their “collection” has been our front porch.   Again, my son was both disappointed and dismayed he couldn’t bring in his rock collection to take to bed.

The Tiny Girl Chronicles:  My daughter’s tactile skills are compensating for her lack of vision.   There was a toy cash register at my parent’s house this weekend which contained a large array of plastic coins.   Intermixed with these coins were a few real coins.   My daughter realized some of the coins were real and went through every single coin, separating them out.    She netted over a dollar when she was done.

Thursday, June 23, 2016

Friends From Long Ago and Far Away

I had a best friend when I was little.   Jenny was four years younger than I was and I’ve heard stories about my excitement when she was born in the hospital but I don’t have real memories of my own until she was a few years older and we had become great friends.

The memories of all the things we did and fun we had comes flooding into my mind as I write this.   The time seems long in my mind, but was only six or seven years until her family moved to another city which was a three hour drive away.

Our families kept in touch and we saw each other from time to time and even though we moved on in our lives, she’s still that first best friend I’ll never forget.  

As we arrived in the mountains to visit my parents, my mother told me Joan and John, the parents of my childhood best friend, were in town.  They had Lily, Jenny’s daughter and their granddaughter with them.    The last time I had seen Joan and John them was at Jenny’s wedding.   It’s been enough years that Jenny and her husband have two children, both older than mine.

My mother told me they were on the way over and they had to leave shortly, but they’d stay for a few minutes to catch up.   When they arrived it was like old times.   They looked the same to me: Joan stunning and John handsome.   Their granddaughter, Lily, was a beautiful young lady who reminded me of her mother.

We caught up, told stories, reminisced, laughed and cried.   It was so wonderful to see them.   We have plans to schedule a visit to see them, Jenny and her family in the near future.   It would be a trip to remember.

The Big Boy Update:  My children participated in an art class at the museum in town today.   My son did well and surprised me at the end by wanting to write his name on the back of his drawing.   We worked through each letter one at a time with him asking to do his name in cursive, not print.   The result doesn’t look like his name, but that’s because his letters are of all different sizes.    In the end he was pleased with himself.

The Tiny Girl Chronicles:  John, my best friend from childhood’s father, and I talked about my daughter’s eye situation.   He said he was so sorry this has happened to her.   He and I both shed a tear together and agreed it was a terrible thing to happen to anyone.   As we talked about the loss of her vision we both watched her happily playing with my mother.   “She’s happy” I heard myself saying, not because it’s an excuse, but because it’s true.   Seeing her happy as she is takes away much of the pain and sorrow for us all I think.

Wednesday, June 22, 2016

Muscle Memory

Today we drove to the mountains to visit my parents for a few days.   It’s the first long trip we’ve taken in a Tesla and there was extensive discussion about charge percentages, amount of time to wait at the super charger and what our ultimate charge would be when we arrived at our destination.   After a very short stop to charge mid-way, otherwise known as a “potty break”, we made it with seventy range-miles to go on the car.   Easy, even with the air conditioning on.

We had a visit from some very, very dear friends of mine from my childhood, which I’ll talk about in a separate blog post because it was that exciting to see them after so long.   After they left we began the phase of our day otherwise known as “catch your own dinner”.

We decided to take the children to a trout farm.   My mother had every other facet of the meal ready for our return, save the fish we’d need to fry for the main course.   A half-hour drive and we were at a trout farm, ahem, “pond” where we were hopefully going to catch some fish.  

We were given a can with a few kernels of yellow corn and a tub with some dirt and night crawlers.   We selected two fishing rods and without any instruction other than “big fish in this pond, little fish in that pond, put both corn and a worm on the hooks” we were off on our adventure.

We elected to go to the little fish pond and after getting the hooks baited we were ready to go.    We then realized no one knew how to effectively cast the rods into the water.   We were overly cautious because hey, sharp hooks and children running around.   That being said, the adults muddled our way through getting the hooks into the water for a bit.

My father then observed the mass of fish on the far side of the pond near the water spout.   We relocated and began throwing—rather ineptly—our rods in the direction of the thronging fish.   There were challenges getting the reels to play out and the hooks into the water near the fish.    I asked my father if I could take over and try.    And this is where it got interesting.

If you had asked me how to cast a rod and what to do once the hook and bobber was in the water I don’t know if I could have told you or described it.   But when I took hold of the rod, I just knew what to do.   I knew how to throw it back, when to press the button to release the line and how to generally cast into the water.    I didn’t get it right every time, but I knew what I was shooting for.    When I got it right, I was hitting right into the middle of a group of trout.

By virtue of this ancient muscle memory I was able to catch three fish, more than the rest of our crew.    The thing is, I hadn’t cast a fishing rod since I was probably ten-years-old, hanging out on the dock with my cousin, Rebecca, who lived on a lake.   That’s well over thirty years ago, and yet I was simply itching today to take over the rod and cast it into the water, because I just knew what to do.  

We fried the fish, had corn, tomatoes and broccoli for dinner.    Fresh fish is tasty.

The Tiny Girl Big Boy Cycle of Life Update:  Children don’t have a real understanding of life and death when they’re young, but it’s important to help them understand the cycle of life.   They were interested in the worms we were putting on the hooks today, particularly in how we were tearing them in half because they were too large.   They also wanted to understand what was happening with the fish we had caught, which they understood were for dinner.   We explained the man was helping filet them for us so that the heads, skeletons and tails were removed so that they would be easier to cook and eat.   As children, they accepted this information naturally and without concern.

Tuesday, June 21, 2016

Eleven Minute Update

My husband and daughter flew to Detroit yesterday for an office visit with her retina surgeon today.   There were flight delays resulting in them getting in after midnight last night.   They’re on the way home now after seeing Dr. Trese for about eleven minutes.    That’s a pretty long trip in distance and time for just eleven minutes.   But it’s worth it.   This is where we need to be.  

If you’re wondering how I know it was an eleven minute meeting, it’s because my husband started an audio recording when Dr. Trese walked in and stopped it when he left.   Why is my husband doing this?   Terms.   Medical terms and descriptions.   Many times we get lots of good information, but we don’t have a frame of reference for it because we aren’t eye specialists.   Commonly, after seeing Dr. Trese I have to do research to gain a better understanding of my daughter’s eyes.

Enough of that though, let’s get to the eleven minutes and what was said.   It was only an office visit, but Dr. Trese though her right eye retina looked flat.   There is some of the PFO in the front of her eye, which we didn’t want to happen, but after he opened up her clouded lens capsule it could more easily happen.   Dr. Trese said it’s no reason for concern, just have her lie on her back and it will move back into the rear of her eye.

He said both eyes looked good size-wise and the left eye looked slightly better as well with a possibility of reduction in retina folds.   This could be due to increased pressure in her eye, which his good news as the pressure was at zero in December.   The circulation in her right eye, which has been a concern, looked good.  Her corneas are clear.

What about the lack of discernible vision in the right eye, though?   Dr. Trese said four months is about the minimum for cells to rebuild in the retina.   After that they tend to start re-firing again but that’s a process which takes time.   We’re still in the formative period at only six months since her initial surgery.

Is the brain in play and ignoring the right eye?   He thought it was possible, but not to a significant level because she has bilateral vision issues which makes it unlikely it’s strictly amblyopia/brain related.

Something that’s been improving that’s not directly measurable by improved vision is the pressure in her eyes.   The left, untouched, eye has gone from zero pressure to normal pressure.   It was thought the ciliary (fluid producing) bodies had been damaged beyond the point of repair.   To have the pressure return is excellent news.   The right eye appears to have begun to recover as well.   If her eyes are able to produce fluids and maintain pressure it changes the amount of intervention and addition of foreign substances needed to keep her eyes functional.

What next?   She returns at the beginning of August for an evaluation under anesthesia and likely surgery.   He won’t make a decision on what he’s doing until he sees her that day, but if the pressure in both eyes is normal he will remove the PFO as well as the Silicon Oil in her right eye.   Those two substances do not permeate out of the eye and have remained since he added them in in December.   But by removing both substances the amount of fluid in the eye needs to be rebalanced.   To do this he will add Healon into the eye to return pressure to normal.   The Healon will naturally permeate out as the eye produces its own fluids.

We’re following up with our pediatric ophthalmologist to discuss patching the right eye going forward.   It may still be early, but it’s a good time to think about a plan.

So good news, or hopeful news.   That coupled with a complete lack of bad news and I’m having a happy day here.

The Big Boy Update:  My son has been wanting to keep pieces of trash as “pets” over the past few days.   Is it that he doesn’t want to put the napkin, straw, piece of plastic into the trash or does he want to just keep it?   He has three things he’s keeping now.   He’s arranged them on his Lego table with the rest of his Legos.

The Tiny Girl Chronicles:   FaceTime.   I got a call this morning from my husband, but I was confused because it didn’t have the standard picture on the call screen indicating it was him.   I answered the call to see his face and realized he’d done a FaceTime call, something I haven’t done in a long, long time.   My daughter had wanted to see me.   We said hello, she told me about putting coins in the fountain and then I took the phone so my son could say hi too.   He kissed the phone three times for his sister and three times for dad.

Monday, June 20, 2016

Too Soon / Too Late

My husband and daughter flew to Detroit this afternoon for an office visit with her retina surgeon today.   My husband was getting things together for the trip and, to me, seemed to have far more that needed to be done given the time he had remaining before they left for the airport.   When I made a comment about how he was going to fit it all in, he told me not to worry.  

He did get most of the things done on his list, leaving some of the things he was thinking about doing that had nothing to do with the trip and could be done later.    I told him I didn’t know how he did it, cramming it all in at the last minute—what if something came up?

He’s had similar comments for me in the past, only they’ve been in the opposite direction as I tend to start preparing for a trip days before we leave, which sometimes leaves me with not that much to do just before we depart.  

I don’t mind it my way, because I don’t have to rush at the end.   He doesn’t mind it his way because he doesn’t have to deal with it until shortly before we leave.   Both ways work.

The Big Boy Update:  My son and I played a memory game today with cards given to him by Uncle Jonathan.   He was interested in how the game was supposed to be played—the one who makes the most matches by remembering where the cards are wins—but he didn’t like that version as much as the version he made up.  I “played” his version for over twenty minutes without understanding a single rule save that he got to have most of the cards despite my attempts to protect them, including putting the game box over them towards the end.   We had fun though, which I suppose is the real point of playing a game.

The Tiny Girl Chronicles:  My daughter was cleaning the shower door with a spray bottle and cloth this morning (she loves to clean things with a spray bottle) when she suddenly said, “I wish all my wishes would come true.”  I asked her what she was wishing for, hoping against hope she wouldn’t say something devastating like, “I just wish I could see again.”  But no, she told me she wished she could have a train in the back yard…and a carousel.

Sunday, June 19, 2016

Three Cooked Meals

Today is Father’s Day, which means we’re suppose to honor our fathers (or husbands who are helping bring up our offspring).   This typically means catering to them in some way more special or atypical to how we live our lives the rest of the days of the year.   I celebrated with my husband today by having three home-cooked meals—by him.

“What?”, you say?  I know, right?   The idea came about last night when I saw my husband getting things ready to make pancakes in the morning for the family.  I reminded him it was Father’s Day the following day to which he replied, “you know how I like to cook, cooking three meals tomorrow would be a great Father’s Day for me.”    Without a second though I shoved my hand out to shake on the deal and said, “done!  I would never want to deprive you of your father’s day wish.”

We don’t celebrate holidays such as Father’s Day, Mother’s Day and Valentine’s Day very much as a family, owing to the expectation we love and cherish each other every day of the year.   This has worked well for us, possibly because the aforementioned statement is true or possibly because we’re both too lazy to make a big to do about these holidays otherwise.   Whatever the reason may be, we’re happy in the way we celebrate as a family.

And as a family, we all enjoyed his pancakes, bacon and home fries breakfast, hamburger sliders for lunch and pasta for dinner.    I hope his day was an enjoyable one.   As for me, I’m already looking forwards to next Father’s Day.

The Big Boy Update:  This penmanship/writing/drawing thing can be frustrating to both my son and me.   We’re trying to practice every day—and by we, I mean me.   My son isn’t too keen on the whole thing, mostly because he sees it as work he’s not good at.   I know it needs to be fun for him to want to continue, but I lost my patience with him today, the details of which I won’t go into but both his any my patience was tried in the process.   Ultimately he came around and did some very good work with my husband and me a short while later.   He’s making significant progress which will hopefully be evident when he goes for an evaluation with the occupational therapist in a week.

The Tiny Girl Chronicles:  Tomorrow my daughter goes to see her retina surgeon.   Today I experienced one of those depressive moments with her that crush the hope I have her vision will return or even improve some.   There were circumstances involved but the bottom line was me asking what she saw out of each of her eyes because she was in a receptive mood.   She told me about the right (multiple surgery) eye, “I only see black.”    I spoke with my father on the phone about this at some length today which wasn’t the best Father’s Day phone call I’m sure, but my daughter’s vision is on all of our minds.   Then, this afternoon, my husband caught my daughter in a reasonably good mood and patched her left eye to try and find out what the right eye could really see.   She was able to tell when he was waving at her and was able to see obstacles before walking into them (albeit just before hitting them).  So I still have hope the brain is a significant factor and the retina isn’t completely dead.


Saturday, June 18, 2016

The Stamp Game

My children brought home the contents of their cubbies at the end of the school year.   This included anything we were wondering if we’d lost as well as some things that weren’t ours.   They also brought home some work they’d been doing over the last week of school.    My son’s bag contained a small sheet of paper in which he’d added together two four-digit numbers.   He’d brought home these “final results” pages before, never bothering to tell us anything about it.

Here’s the one he brought home on the last day of school:


From an adult’s perspective, this is just adding two numbers but from a five-year-old’s experience and understanding of numbers, this is a lot more work to figure out.   I didn’t know what the work was called so I just went upstairs to ask my son and was told, “oh, that’s the stamp game”.  

Notice on the top above the first number there is a single dot (digits) a line (tens) a square (hundreds) and a cube (thousands).   Numbers are taught by physical representations, with the units being one golden bead, the tens being ten beads on a wire, the hundreds being a grid of ten by ten beads and the thousands a full-on cube of ten by ten by ten golden beads.  Ah, here’s a picture showing what I mean:



In order to add those two four-digit numbers, my son translates what he can see as magnitude (the beads) into a numerical representation with the stamps.    He figures out the addition problem through what I’m going to call, “exceptionally long addition” but he has a good grasp of how addition happens.   The fact that it’s a large number doesn’t really matter, because the process is the same.  

I notice in the example he did there was no carrying over into the next larger digit, possibly as he’s new to this area of work.    It’s interesting to see how the “game” is played.   My son doesn’t seem to think addition anything other than the norm at his age.  

The Big Boy Update:  I told my son it was time to help with the dishes this morning as I watched him constructing something from the tubes he’s still obsessed with.   He didn’t even look up when he told me, “Mom, I have some business to do first.”

The Tiny Girl Chronicles:   My daughter had been having a tea party with Nana and Papa this morning and when they had to leave she asked me if I would join her.   I told her I would be glad to join her as soon as I’d made my coffee.   She said, “don’t worry, I will pause it.   I will rewind it to the beginning and start over.”   She did, and we had a lovely tea party with her, my husband and son for the next hour.

Friday, June 17, 2016

The Smell Source

I have been confounded by a smell.   It’s on my side of the bed and can only be smelled when I’m facing the edge of the bed.   It smells like urine, which would likely be dog urine if that’s what it is.   Only it’s been infernally hard to locate.  

You’d think this would be an easy task: the dog peed, she’s a girl so she squats, the odor is located in one area—get down and sniff until you find the spot.   Simple.  Find the problem, clean it up.   Only I couldn’t.   I have a reasonably accurate sense of smell which has served me well over the years.   If I could smell it in the air then the main source must be more intense.

Imagine me on hands and knees on the side of the bed with my nose in the carpet—go ahead, it’s a funny image.  Imagine me down there carefully smelling everything in a wide radius including under the bed which is high enough for me to wedge my head under.   Nothing.   Not a hint and definitely nothing that would knock me back on my heels and yelling out to my husband, “I found it!”

Even so, I sprayed pet and carpet biological cleaner and then put Capture powder on the whole area which I vacuumed it up hours later.   No go, that night the smell still persisted.

Could it be the pillow?  That would make sense, close to my nose, only on one side, maybe the dog climbed up during a thunderstorm when we were out.   But the pillow only smelled like a normal pillow.   Bedding?   A king-sized comforter is a lot of area to smell, but I smelled all the areas on the side of the bed and area I was getting the smell from.   Nothing raised an odor flag so I moved on.

We had had this problem once before, which made me wonder if it wasn’t urine at all.   We had had the carpets cleaned.  An inexperienced employee wanting to make sure he did a thorough job on our bedroom ended up over saturating the carpet, getting the carpet pad wet in the process.   This resulted in a high humidity level and an unpleasant smelling situation.    It took a week with a dehumidifier in  bedroom to get the smell to abate after that.   That smell at that time was similar to what I was smelling now.

So I brought in the dehumidifier and ran it for a day and then when that didn’t fix the smell I got desperate—I asked my husband to see if he could find the smell.   He did the same searching around for the scent as I’d done.   He thought he’d found it several times but after I’d smelled it and said I didn’t smell anything, he’d go back and say he agreed.   At different times we each thought we might have smelled something, but if it was the source, it should have been strong, pungent and repugnant and we just weren’t getting that.

This is all based on the urine hypothesis in the first place, which I was only jumping to because of the dog’s recent health changes.   She’s never urinated in the house, holding it for hours and hours and never complaining.   Recently she’s been put on additional medications, one that’s diuretic which makes her thirsty (therefore needing to urinate more) and one that is hard on the kidneys.   So it could have been the dog, I thought.

I was getting desperate so I took the comforter and put it in the living room, wondering if I’d missed some spot in my nasal explorations a few days before.   I pulled the sheets off.    I smelled the mattress.   I smelled the side of the mattress.   I went into the living room and sniffed all around and over the comforter.   I got nothing definitive.   But to be sure, I stuck the sheets and comforter in the washing machine and added scented fabric softener for good measure.   Then I emptied the dehumidifier and waited for the laundry to be done.

That night I’m pretty sure I didn’t smell the smell.  I wasn’t completely sure, what with the lovely floral scent now emanating from the comforter.   Three days later it hasn’t come back in force, so I think it must have been the comforter or sheets.   I’m going with that as my working diagnosis unless the smell comes back.  Case closed (hopefully).

The Big Boy Update:  Did I mention my son can weaponize anything?  It was concerning for a while, but with some guidance he’s gotten it under control now.  He mostly likes  to emulate poses and look at himself in the mirror.   As a tangential note, my son has decided he likes to brush his hair to  look “handsome” which is a new development from the hated hair brushing of prior months.   Today he came running out of our bedroom saying, “Mom, did you know your hair brush has a gold spike in it?”  It does indeed have a gold spike which can be pulled out from end of the handle and used to help more accurately part hair.   My son was so thrilled with this discovery he spent twenty minutes in the living room posing and doing “moves” with the brush as his new super power weapon.

The Tiny Girl Chronicles:  My daughter came home two days ago humming a new song.   She does this frequently and it’s not uncommon for the song to be something she’s made up.   It’s more common it’s a song they’ve sung in school or after school.  Usually I have little chance of figuring out the song.    However this bit she was humming sounded very familiar.   It involved something like, “doo oo oo, ahh ahh ahh, something something something”.   She had done this several times when I asked her where she heard the song because I had a hunch.   She told me it was Riley’s song.   Okay, my hunch was getting stronger now.   The class had listened to the class CDs, which included one song submitted by each child as their favorite.   After hearing that I pulled up my phone and searched for “De do do do, De da da da” by The Police and started playing it.  My daughter immediately cried out, “that’s it!”

Thursday, June 16, 2016

The Intentionally Irresponsible Parent

The title of this post was me today.   I made a conscious decision to do some things others might have deemed irresponsible.   Let me explain…

First, it was the last day of school!  As an aside here, exclamation marks are overused in writing a lot and I try to use one for every twenty times I’d like to because otherwise I’d sound like a peppy cheerleader after drinking three Mountain Dew sodas for most of my blog posts.   But yes, it was the last day of school and I was excited.   I was mostly excited because the children’s schedules have been a mess.   What  with the multiple therapies (Orientation & Mobility, Play, Music) plus gymnastics plus swim team in addition to full days at school is just been too much.   My sitter, who is great, must have thought me an inept mother at best and a calendar-challenged fourth grader at worst what with all the changes and mistakes I made.    As a result, I think out of all the members of my family, I was the most excited to have the last day of school finally arrive.

Today, school was dismissed at noon with an all school gathering at a nearby park for pizza lunch and Kona Ice for the families, teachers and staff.   When we arrived, I sunscreen the children, helped them get some food and then spent the rest of the time talking to adults and children, paying very little mind to my children unless I was specifically needed, which was the first intentionally irresponsible thing I did today.

My daughter was one purple shirt-wearing child among a sea of purple shirt-clad children.   There were adults everywhere under and around the shelter.   Children were playing in the grass with hula hoops and bubbles and chaos was in high swing.    It is here that I will remind you my child is blind, or, well and truly visually impaired, whichever way you want to think about it.    How does a blind child find me, her mother, also wearing a purple school shirt, among all the people milling about?

I wanted to see how she fared in an unfamiliar environment with a crowd of people.   I had a plan you see.   And before you think me a terrible mother, I knew she would be safe because she isn’t the wandering off type, is quite happily independent and was surrounded by parents and teachers who all knew her and could help her find me if needed.    And she was indeed brought to me several times during the event, although I’m not sure she was in more trouble than any other child who might call out, “Mommy? Mommy?” because they don’t see them in the immediate vicinity.   My daughter was never upset and the reason she needed to find me was usually for something like, “mom, can I have some watermelon?”

I was impressed by how well she did overall.   She listened and watched the large freight train go by near the area, found and talked to some of her friends and definitely had a lot of food to eat.   The most daunting thing about that whole portion of the afternoon was the roots.   We were in shade under large, old trees with gnarled roots sticking out of the ground in what I’m going to call low-contrast dirt areas.    Without careful walking, she could have fallen, but she was reasonably cautious and nothing happened.

The next part of my afternoon of irresponsibility was in leaving my son alone.   He’s five, and he’s also just as independent as his sister.   This particular park is large but at this time we had moved to the playground, children’s train, swings, carousel area.   My son was interested in playing on the play structures while my daughter wanted to ride the little boat-go-round and the train.   I lost sight of my son but knew he really wouldn’t have wanted to go anywhere other than the jungle gyms or sand play areas so I didn’t fret.   Then, suddenly, my daughter had a dire need to go to the bathroom.   So I left him.

The bathrooms in time and distance would have been a quick four minute round trip for an adult, but I had a hot, tired four-year-old in tow which added significant time.   Then, we discovered the bathroom was being serviced and had to go to the second bathroom area another walk away, now backed up with a line.   By the time we got back it had been about twenty minutes.   Where was my son?  In the sand play area not one bit worried he hadn’t seen me in some time.

After that my daughter wanted to ride the train, which goes around the park perimeter, another twenty minutes of time about we’d be away from my son, who had no interest in leaving the sand.    I told him to look for us and wave when the train came by.    He did about fifteen minutes later while we waved back at him.   The only bad part about the whole thing was trying to get him to leave the sand to go on the carousel.

The day from my perspective was a success as I watched both children manage themselves independently and easily, even with the vision deficit my daughter has.   They may not be officially in kindergarten yet, but they have self-confidence and can manage themselves without a parent beside them at all times.

The Big Boy Update:  My son found a video on his iPad today and excitedly brought it to me saying he’d found a Lego he thought he and daddy could do together.   I told him I’d look it up, knowing from the size of it in the adult man’s hands it was going to be an adult-priced Lego.   When we found it online I told him it was over two hundred dollars and that it was too much to put on his wish list.  He was disappointed but I think he still plans on asking my husband about it later.   He remains hopeful.

The Tiny Girl Chronicles:  My daughter was confused by the two trains today.  The first was a large commercial freight train running behind the park.   I had told her there were no passengers on it.   When we went later to ride on the park’s train ride she said, “but you said there was only cargo allowed on the train, where will we ride?”

Wednesday, June 15, 2016

Tagalongs

My son has a reaction to peanuts.   I don’t know if it’s technically, “allergic” or that he doesn’t tolerate it well.   I would lean on the allergic side because he used to break out in hives around his mouth when he ate them followed by a rough outbreak of eczema a few days later.     Now, several years later, I’m not sure how bad the reaction is anymore.    I think it’s lessened, just like all the other food allergies he had that have gone away.    It’s hard to tell though.

It’s hard to tell because he doesn’t want to eat anything with peanuts.   Hell, I wouldn’t want to either if I’d had a reaction to them in the past that was unpleasant.    We’ve been able to find out some things by working in things which contain nuts and seeing his reaction.   For instance, he has eaten things with almonds on/in the mix and not noticed it.   He’s had things cooked in peanut oil, which is somehow not related to the allergic part of peanuts for some people, and had no reaction at all.    But he’s also been very upset about eating things he knows have nuts in them.

That’s the trick though—not letting him know.    He will immediately know if there are peanuts, that’s been tested a number of times.   What I don’t know is if or how the reaction is changing.   Is it lessening or getting worse?   My son just spits it out and won’t get near that item again.

We’ve tried the other “butter” options since peanut butter is right out.   Almond butter he didn’t like, sun butter he said was yucky and Wow Butter he thought was dreadful.   These aren’t one-off tests either.    I am sneaky and will insert some of the above ingredients with his other, preferred choices but he noticed every time.  

Still though, he’s not allergic to any of those things.  Today he served us and then proceeded to eat tagalong bar he made with his classmates that had a full slathering of almond butter in the middle.   He never even looked twice to see if it was something he might not like.

Getting him to try things again without pre-judging the experience is something we’re working on.

The Big Boy Update:  We joined my son for a pizza lunch and piñata party to help wish his graduating classmates off.   My son set our places including plate, utensils, napkin and glass with water.   He cleaned up the table afterwards and then had a good time hitting the piñata with his friends on the playground.

The Tiny Girl Chronicles:   I forgot her gymnastics suit what with the second to last day of school and a pizza party to attend in my son’s class.   My daughter did gymnastics in her dress, which didn’t bother her at all.   In fact, she was particularly pleased at how it fanned out when she jumped on the trampoline.

Tuesday, June 14, 2016

Late at the Pool

Whew, we were out late at the pool this evening.   Multiple events and people caused us to linger longer than we normally would have.   Were it a summer day with no school (only two more days until school is out) it would have been different, but we needed to get back home.   Or, rather, I needed to get the children back home to get them to bed so they’d be up and ready for the day tomorrow on time.

We got home and there were issues.  The older child’s issue was not listening or more to the point ignoring and doing nothing he was asked to do while at the same time doing things he was specifically told not to do (pull out toys to play with).   The younger child was unable to do anything useful at all because it was colder inside than outside which in her mind translated to sitting on the floor screaming about the cold and loudly crying.  

Neither child was helping at all, something I had asked them if they could please do given the late hour because I let them stay at the pool with the multiple families they wanted to play with instead of getting out and coming home at an earlier time.

So I screamed.   I don’t mean I yelled, I screamed.   I think I scared them.   I hate when I do the yelling thing, I doubly hate when I do the screaming thing.   It centered them though and they got dressed, brushed their teeth and the complaining was reduced by at least sixty percent.  

When we went upstairs to bed I read them one of their favorite books after finding out they still wanted me to come into their room to read and say goodnight after the screaming incident.   We ended the night on a good note and I apologized, saying moms and dads get upset and mad sometimes too.  

The Big Boy Update:  This morning I was talking to my son, who wasn’t paying attention.   I told him I needed him to look at me so he could listen to what I was saying.   He looked at me and said, “you don’t look like you’re young so I’m not gonna look at you.”  Ouch.

The Tiny Girl Chronicles:  My daughter got out of the pool this afternoon and lay down on the dry concrete to soak in its warmth.   She got up a few seconds later and after looking down said, “look, it’s a wet picture of me.”

Monday, June 13, 2016

The Boodie Butt Virus

We have had something going around our house from time to time and I haven’t been able to figure out who caught it or where it came from.   Typically when things like this happen I turn to the viral environment of school for the direction in which I throw blame.   It’s not always the case, and I’m never upset when children catch something from one another, it’s just how things happen when little bodies are around other little bodies all day long.

This particular thing started showing up after the holiday break.   From time to time one of my children would use the words “boody butt” when describing something.   Typically this would be a humorous description of their friend or my husband or me.   Sometimes the description was used in anger when something was seen as bad.   However it was used, we never encouraged it and tried to discourage it without making so big a deal about it that it encouraged use instead.

Then, there was a mutation.    The phrase, “boodie butt” was accompanied by a dance in which the child (usually my daughter) would stick her butt out and smack it.    If you’re imagining a dance wholly inappropriate for a four-year-old girl to do as you read this, you’ve got the picture correct.   It was both silly and horrifying to watch as an adult.  

Where did my daughter get this from?   Did she make it up?   Who else has she shown this dance to?   We didn’t know and hadn’t gotten a phone call or email from the teachers and since it was infrequent, we let it go with a, “let’s come up with a different dance” and a change of direction.

Saturday night we were at a dinner with other parents from our school.   I’m not sure how we got on the subject—I blame the bourbon tasting—but we found out other parents were experiencing the same thing.   Our hosts told us how their daughter (who is close friends with ours) likes to hold on to the oven door handle and do the butt spanking dance while naked.    Their reaction mirrored ours when they first saw it.  

None of the parents knew who’s child started it.   It seems like any other virus—you don’t know where it came from, who started it or when it’s going to go away.     For now, we’re still infected with the “Boodie Butt” here at our house.

The Big Boy Update:  It’s been since mid-April that my son has been on a wait list to get in with the occupational therapist to help with his grasp and writing.   A fellow parent spoke very highly about the therapist we’re waiting for and said she’s worth the wait.   Today, I called and since we were almost up on the wait list was able to finagle an evaluation on July 6th (it pays to keep on top of things).   After that, we’ll hopefully be able to get on Bethany’s schedule in short order.   When I picked up my son today I told his teacher and she said she thought Bethany’s personality was the best fit for my son.  On the home front, every day we practice drawing and writing with my son, I see improvements in his grasp and control.

The Tiny Girl Chronicles:   My daughter was inconsolable about going to the pool for swim team today—until she wasn’t.   It was a sudden change of mood, not directly associated with food consumption (or lack thereof).   If I could just read the minds of these children, I would be such a more effective parent.

Sunday, June 12, 2016

I Ran

I got out of bed this morning and went for a run with my friend.   This in and of itself shouldn’t be a big surprise to anyone, seeing as I’ve done a lot of running and reporting of my running over the past several years.    Two weeks prior I swam/biked/ran in a triathlon, which was nice.    The thing is, I haven’t done anything since that triathlon.

That’s two whole weeks without any exercise, which was nice.    Two weeks isn’t that long, but it seems like a long time in my mind.   Did I lose muscle?   Will I be tired as I run?   Will I even remember how to run?

This makes no sense, but on many days my mind doesn’t make sense.

The Big Boy Update:  My son asked my husband yesterday, “what does ‘yoo foah’ mean?”  My husband didn’t know what he was talking about so my son made it more clear by saying, “you know, U-F-O”.   Where did he hear about that, I wonder?

The Tiny Girl Chronicles:   My daughter had such a good time spending the night with Mimi and Gramps on Friday she has asked them if she can spend two nights next time.   Mimi and Gramps:  we’re all for it if you are.

I Still Remember How To Run Update:  Six miles.

Saturday, June 11, 2016

Is That Your Work?

We’re trying to be in the positively hopeful realm when it comes to my daughter’s eyes.   At the same time, we’re also firmly situated in the realistic world as well.   We want to see progress, improvement, any signs that her vision is getting better in some way, any way.    But we have to be realistic.    It’s too easy to take a single point of data and extrapolate to get the result you want to have.   People do that all the time but a single point of data is not enough to draw a conclusion, especially when there are so many points of data to compare it to each day.

That sounded rather wordy.   To sum up, we’re hoping for the best but go with what the evidence actually shows us as we try to draw conclusions on the status of my daughter’s vision.  

One of the data points we have regularly is the work she brings home from school.   If she’s done a painting, drawing or other work, she’ll put it into her purple school bag and bring it home.   Typically, she’s too busy running off to play with the neighbor’s children after school so we ask later in the day for her to tell us about what we found in her bag.

As a substitute, I’m familiar with the types of work they do in a Children’s House Montessori classroom.   When I see certain types of work come home I make a mental guess about who’s work it is.   Drawing is a tough one because my daughter loves to draw.  Her drawing skills are at a certain level based on age, experience and vision ability.   Sometimes a great piece of work comes home and I wonder if it’s a sign she’s either seeing more or has better visualization of her surrounding world.   Usually when I ask her if these types of drawings are hers she’ll say, “Neel drew that for me.”  She has multiple friends that like to draw and then share their work.

She does a lot of cutting work, following patterns and lines.   She’s quite good at cutting but her accuracy isn’t as spot on as a normal sighted child’s would be.   Sometimes, again, there will be for instance a very well cut spiral in her bag.   When I ask, I get the same response, “Naya gave me that.”

Then there are the new works.  Work that my daughter hasn’t been given a lesson in yet, but could learn at any time from her teacher if she shows interest and is ready skill-wise for the work.   One work came home like this the other day in which a circle was “cut out” using a pin to punch around a circle line.   One the pin has been punched all around, the child can press out the circle (or other shape) just like you would anything perforated.   In essence, they’re creating their own perforation, building excellent fine motor skills along the way.     Was it her work?  Sadly, no.

She is doing work at school, but it’s moving slowly by necessity due to her current vision.    She sees her retina surgeon next week and we’ll find out his next plan and thoughts.   I was hoping for some return of sight by now, but we may be fighting a brain ignoring her right eye.  

So we’re hopeful, yes, but realistic always.   Being realistic sometimes sucks.   Having a happy daughter mitigates much of it though.

The Big Boy Update:  My son came home from his overnight campout today.   He had a very good time and told us about some of it until he got too tired and cranky to tell us more.   We let him have the iPad to wind down after the busy two days camp in the woods.   He fell asleep with it in his lap.

The Tiny Girl Chronicles:  My daughter had a sleep over at Mimi and Gramps last night—her first.   She played treasure hunt with my mother, got a fuzzy blanket and wooden xylophone from my father—which she loves, and slept a full eleven hours, waking up at eight o’clock (later than usual) to have a nice breakfast with my parents before I came to pick her up.   My mother said she was a delight and my father said, “she’s such a sweet little girl.”   I agree with my father, she is.  

Friday, June 10, 2016

Compartmentalization

My son was recently evaluated by our play therapist my daughter sees.   We decided to take this step after our most recent parent-teacher conference where we found out there were certain things he was struggling with in the classroom and at school.   Some short-term work with both him and us as parents would help him where he was lacking some skills.

One of the insights Dhruti, our therapist, had was that my son doesn’t know how to compartmentalize things.   She said he has so many things floating around in his head he gets into a state where he’s not able to move forward, select work or relax because he can’t pick out what’s important and what he doesn’t have to worry about right now.

She suggested a calendar so that my son would be able to see when things were going to happen in the future, know he could find the information later when he needed it and then put it out of his mind, lessening the mental load on him.    The calendar has been a big help for him as well as my daughter.

I hadn’t been introduced to compartmentalization as a mental skill before, but ever since the day we discussed it in Dhruti’s office, I’ve been realizing how very much I compartmentalize things.    For example, I was at school on Tuesday and one of the teachers asked me, “you’re subbing for Precious on Monday, right?”   Folks, I had no idea.   There was a little niggling thought in the back of my head that there was an email exchange from Precious about some substituting at some point.   But truthfully, I had no idea if I was or wasn’t subbing coming up on Monday.

I told the teacher I would confirm on the calendar and sure enough, I’m scheduled to sub for Precious on Monday.   After that conversation I thought back to Dhruti’s words when she said, “he’ll see it on the calendar and then know he can put it out of his mind because he knows where to find the information later.”  

That’s me.  That’s me all the time, about everything.   The more I’ve been thinking about compartmentalization the more I realize I over-compartmentalize things.   I make lists for things so I don’t  have to worry about them.   There’s the shopping list, the To Do list, the blog topics list, two lists, one for each of my children for their sections in this blog, the travel packing list and those are just the top used list in my list of lists.

I also do positional compartmentalization.   If I have something to give to someone, I put it by my purse before I leave the house or I’ll forget it.   I have, actually, forgotten it which is good because I’m not worrying about remembering to take it, but that means I have to have a trigger to remember it when it’s time to leave.

I put the laundry basket in a particular spot so I’ll remember to move the clothes to the dryer.   I put sticky notes on the counter on trash day and I even have a little piece of paper to remind me to put an ice pack in my son’s lunch every morning—something I’ve done for four months now, but I’m not completely sure I’d remember without that reminder.

So is it a good thing I’m so good at compartmentalizing or is it a deficit because I can’t or don’t remember things that have been filed “handled” in my mind?   I’m not really sure.   I’ve heard many, many comments over the years about how well-organized I am, but am I well-organized because if I wasn’t I’d never remember to get anything done or where anything was?

Skill or Handicap?   I don’t know, but it’s how my mind works and at forty-six-years-old it’s probably how it will always work.

The Big Boy Update:  My son is on his first overnight field trip with school.   He’s five-years-old and he is excited.   They’re camping in the woods in cabins in the large state park near our house.   His class has been preparing all week and this morning he was ready to go.   When it was time to go into the classroom this morning he grabbed his paper bag lunch he’d be eating at the start of camp out and walked to his classroom.   He didn’t even say goodbye.    I take that as a good sign.

The Tiny Girl Chronicles:  We picked a gardenia flower from one of our bushes the other day.   I had it on my night stand and had been smelling it from time to time as it wilted over a few days.  When my daughter found after three days she told me, “mom, we need to put it in water!”  I had to tell her flowers didn’t last forever and water wasn’t going to help.   She was okay with that answer, asking only if we could pick another flower tomorrow.

Thursday, June 9, 2016

Can I See That Smile Again?

I was in Bed Bath and Beyond today browsing the multitudinous collections of products when a store clerk stuck his head in the aisle and asked the standard question, “are you finding everything you’re looking for?”  I gave him a big grin and said something like, “absolutely!”  He disappeared and then reappeared about ten seconds later and said, “can I see that smile again?”

It’s such an easy thing to smile at someone and say something happy or positive.   They have to ask the question, it’s part of the job—answering in a positive way back that shows you understand and appreciate their time is also easy.   His comment made me smile again—so much so that I replied, “actually, I do have a problem, you have too many things I’m having a hard time making a choice.”  

We laughed together and headed our own separate ways, him offering to get me a cart should I find more than I could carry in my hands and me thanking him for his help.   He made me smile and I made him smile back.  

The Big Boy Update:  We took away my son’s swords and weapons about two weeks ago as he wasn’t making good choices on when to use them.   He’s been very good since then, although he can weaponize just about anything.   Is this a boy thing?

The Tiny Girl Chronicles:  Yesterday morning my daughter said, “Mom, I’m being a little bit annoying.”  I didn’t know what she meant until she told me she was annoyed her morning voice was raspy.   I told her her vocal cords would warm up after she talked for a few minutes. 

Wednesday, June 8, 2016

If Only One Eye Worked

With everything that’s been going on with my daughter’s eyes, our hopes for their improvement or at least no more worsening, one thing has never occurred to me: what if we had only one eye, but that eye worked?

All along I’ve hoped things would improve and for a long time that hope was quashed with continued worsening in her remaining vision.   Inn December we began to see Dr. Trese in Detroit who took surgical action on her right (worse) eye.   His plan (and hope) was that the right eye could be returned to reasonable working order and then the left eye could be addressed, which was her remaining functional vision.

The right eye has been in limbo and of questionable outcome for months, specifically since December 19th when he did the first major surgery.   The anatomy looks great today, but she still can’t see more than colors using it alone.   Is the brain ignoring the right eye?  Do we have a long path of patching the left eye to find out?  I don’t know.   I hope the right eye is functioning, but we still just don’t know.

The left eye is improving maybe.   It looks slightly better, but not significantly better Dr. Trese says.   She seems (on some days) to see better, but she’s also built lots of skills to compensate for the vision loss in August of last year.    What, if anything, will ultimately be done to the left eye?  Will it get better?   Is it as good as it will ever be at this point?

Then this afternoon as I was thinking about a future where my daughter will have to use a cane (possibly) and learn to read using braille (probably) and never really know what our faces and the world looks like and I thought, “hell, all we need is one eye that works and all that goes away.”

There are people who are blind in one eye that function fine aside from depth perception.   You don’t need a cane to navigate and you can read easily without braille.   You can go on trips to see Mount Everest, Greece and Disney Land and you can see what’s there.  You just need one functioning eye.

I don’t know if we’re going to have one functioning eye, but I would give one of mine to my daughter if it were possible.

The Big Boy Update:  My son and I have been working on his immature grasp for writing for four days now.   His grasp is significantly improved, with him naturally holding the pencil correctly with very little reminding.   He is drawing with more control and more ease and I think he’s actually enjoying the times we spend working on things.   It’s a delicate balance in that I don’t want him feeling like it’s work—therefore I bribe him with M&Ms.   I need to keep it fun as well, so we’re not working letters as much as flow and control.   We’ve drawn some fun pictures together.   Today he drew some planets and I made an alien with a green M&M eye—which my son ate.

The Tiny Girl Chronicles:  Our sitter texted me from the pool this afternoon that my daughter told her, “I want to paint the flying car with purple and pink stripes when I’m older.”   She thought for a second and then added, “and make it a unicorn.”

Tuesday, June 7, 2016

Scheduling

I’m cross.   I’m mad.  And I’m irritated.   This is about scheduling.   I have one husband who manages to wash behind his ears, take care of our children and even cook delicious meals for our family.    I have two small children that don’t look like they could possibly be that much trouble.   What I don’t understand is how I can come downstairs an hour-and-a-half later still be working on scheduling things for our family.

It’s not like I put off scheduling of family events.   When things come in I put them on the calendar.   When I make an appointment I add it right away.   When I find out we have a dinner invitation I message a sitter (or two) and lock down child care for the evening.   I work for a month or more in advance to coordinate dates and times for music therapy, play therapy and other bulk-scheduled items.   And yet, I find myself still at the computer, wondering how it all went to scheduling hell so quickly from yesterday when I thought I had it all under control.

I am just being cranky tonight because I didn’t conjure an exciting evening after getting two not-sleepy children to sleep to be taken up with emails, calendars, text messages and other scheduling things.

My husband heard me make a very rude noise at my desk and has come over, asking how he can help.   I said something very sarcastic to him but he remained steadfast and said there must be something he could do.   And I did have a few things he could help with.   Instead of watching a movie, he’s now helping me.    What a guy.

The Big Boy Update:  My son was looking at a watercolor painting my daughter did over a month ago on our refrigerator.   He looked at it and said, “it’s still wet after all this time…”

The Tiny Girl Chronicles:  This is one of those comments I don’t know where it came from.   In the car for no particular conversational or song-related reason she said, “I wish that I was a vampire because they sleep in the morning and are awake at night.”

Fitness Update:   My husband made dinner tonight and noticed I didn’t put any rice on my plate.   He said, “are you not eating rice since you haven’t exercised since the triathlon?”  

Monday, June 6, 2016

The Money Chart

My children have been interested in doing things for money.   I’ve been interested in building good helping habits so I came up with a plan: I would pay my children for doing things.  

Some of the things they were already doing, like getting dressed before breakfast.   I put a low value on this at five cents.   The new rule though was they had to come downstairs dressed first and not have to be told to get dressed.   They were getting themselves dressed before, but sometimes they had to be reminded no breakfast would be available until they went back upstairs and got dressed.

Some of the items they should be doing but we haven’t pressed it such as putting their dishes in the dishwasher and their cloth in the dirty cloth bucket.    For that, they get another nickel.   Waiting patiently to have us acknowledge they want to speak to us is worth a penny—which is WAY underpriced because I would pay a lot more than a penny to not hear mommy repeated again and again.

Some things they won’t be able to be successful on easily, such as folding and putting away an entire load of laundry for a dollar.   This, again, is a very cheap price given the amount of time it takes me to do an entire load, but if they help and learn in the process and get excited about a dollar, I’m all for it.

They were excited today about doing things to get money for their coin cups.    My son already has twenty-three things he wants to buy with his money.  My daughter hasn’t decided what she wants yet.

The Big Boy Update:  I mentioned Uncle Bob and Uncle Brian would be visiting us in a few months. My son and daughter talked about that for a bit in the back seat while we drove along.   Then my son said to his sister, “I like the one with the ‘rrr’ in his name”.   (They’ve been working on sounds.)  

The Tiny Girl Chronicles:  My daughter came downstairs into our room this morning in her pajamas. I said, “good morning, how are you?” to her to which she replied, “no nickel”.   It took me a minute to realize she decided to come down before getting dressed and didn’t really care about the nickel.   She said she would come down dressed tomorrow morning.   She’s the one who usually gets dressed without being asked.

Sunday, June 5, 2016

The Processed Pantry

I’ve been trying to eat more “whole foods” more fresh items and less processed foods.   I’m not necessarily subjecting the rest of my family to the same dietary expectations while at the same time wanting my children to eat more healthful foods.   Some things are easy, such as eating fruit and vegetables, making meals at home or ordering better choices at restaurants, but there are other things that are more challenging.

My pantry is the biggest “problem” for better choices.   If it goes in the pantry, it should be shelf-stable, needing no refrigeration.   That for the most part equates to “processed” in some way.    I was talking to my next-door-neighbor today about this very issue as I know she and I have similar philosophies on food.    My question was, “what do you put in your pantry for snacks?  I’m having a hard time coming up with options.”

She ran through her pantry in her mind and she laughed and said, “most of the suggestions I have won’t work for  you because they have nuts in them.”   My son has a peanut itching allergy, my husband doesn’t eat nuts and my daughter hasn’t had a lot of exposure to them as a result.   The cereals we have (processed) can’t have nuts in them which rules out almost all granolas; the (processed) granola bars mostly have peanuts or peanut butter.   The trail mixes almost exclusively have nuts in them.

We have some crackers, cookies and chips.   There are pretzels and dried fruit, every bit of it processed.   Some items are better than others such as Triscuits which contain only three ingredients: wheat, oil and sea salt.   There are better options for cookies and chips that I purchase over other options.

I’m still working on my plan for a healthier pantry, but I can say it’s better today than it was two years ago.

The Big Boy Update:  We were riding in the Model X today and had just left the neighborhood at a very leisurely pace to go to lunch.   My daughter was asking if the car could go zoom to which her brother replied, “I think this car is too fast.”

The Tiny Girl Chronicles:  My daughter and husband were busily working on creations in the bonus room before bedtime last night.   I came upstairs to find they’d made their own scooters out of plastic pipe tubes.   The colorful tubes were part of a set the children hadn’t played with in a long time.   Today, after the dual scooter incident, the Tubation tubes were all over the house, taking the shape of many imaginative forms.

Saturday, June 4, 2016

Pickled Watermelon Rind

It’s watermelon season again.   It’s both convenient and thoughtful for the watermelon plant to provide such a hydration-rich and refreshing option during the hot months of summer.   I can’t imagine pumpkin going over quite as well were it to be in season this time of year.

My children and I were at the pool today in the over ninety-degree weather with a full container of cut up watermelon slices to eat during swimming breaks.    As an adult, I take more breaks than my children, mostly because I don’t have the same enthusiasm for bouncing up and down in the water, chasing after dive sticks and kicking around on noodles that they do.   That, and I tend to spend lots of time talking to the other adults present.

When the children do get out for snack, which is commonly by mandate from me, they can go through quite a bit of food and drink.    Today we had most of a small watermelon, none of which came home with us.

As the children were getting back into the pool I looked at all the rinds left on the table and had a memory from my childhood of pickled watermelon rinds.    We ate a lot of watermelon when I was young, but I think my mother made pickled rinds only once after a recommendation from her sister or a friend.    I wasn’t a huge fan of pickles at the time but she said she thought I might like them if I tried them.

Regardless of their final taste, I was interested in what happened to make the pickled rinds.   She and I (or mostly my mother) cut up the watermelon making sure to leave a small bit of the pink part on the rind.   She removed the outer peel with a peeler you’d use on an apple.    Then…and this is where it gets fuzzy…the rinds were pickled.   That part of the process I have no memory of at all.   I don’t know if there was cooking involved or not, what any of the ingredients were, how much we made and how we stored them.    I don’t even remember if they were done that day or it took a month of sitting on a shelf before we could try them.

I’ve looked up some recipes online now and by the simple act of reading those instructions, I believe I remember more than I actually do—which is the main reason I don’t look things up before I write about memories here—memory contamination.

I don’t know if the process was different when I was a child, but the ingredients in the recipes didn’t look different than what we would likely have used then, which means the pickled watermelon rinds would have been ready the next day.

Did I like them?  I definitely did.   They were tart but had a hint of sweet.   They were crunchy and juicy and full of flavor.  I’d like to tell you I remember them having notes of allspice and star anise, but that is utterly false because I read about those ingredients earlier today and am suffering from another issue—memory implantation.

I think I’m going to try and make some pickled watermelon rinds and see if they’re as good as I remember them.   I wonder which of my children will like them?

The Big Boy Update:  My son came into out bedroom this morning and said, “I want to learn about animals.”   After I told him I thought learning about animals was a good thing to want to do, he asked me, “can I watch Wild Kratts?”   I told him that would be fine.   Wild Kratts is a show featuring the Kratt brothers in which they explore various animals and the amazing things they can do (gecko, octopus, scorpion, etc.)

The Tiny Girl Chronicles:  My daughter had her first burrito accident yesterday.   She likes to be wrapped up like a burrito in her towel, which is great, only you have no use of your arms.   She decided to then lie down on the pool deck and was unable to maneuver herself down in inchworm fashion without falling forward and bumping her face.   It wasn’t bad, I’m still not sure where she hit her face, but she was angry about it at the time.

Friday, June 3, 2016

Slacker Radio

Our two cars have a subscription to Slacker Radio.   It’s very much like Pandora, which was one of the first services to popularize the on-demand, customizable and personalizable music services.   It was originally something I didn’t expect to enjoy or use much, but it has become the only thing I listen to in the cars.  

I’ve mentioned before how the children can ask for a particular song or artist and Slacker can find it quickly and easily.   It’s so quick and responsive that my children sometimes ask “why isn’t the song playing?” when it’s been not ten seconds since I asked the car to play a particular selection.

We’ve added stations for all sorts of things that would make most people laugh if they looked at our list.   We have a Rubber Ducky station, a Mighty Morphin Power Rangers station and a station for The Continents.  

Slacker isn’t something I thought I would like, but our whole family appreciates it every day when we ride in the car.

The Big Boy Update:  After swim practice yesterday my son needed to go to the bathroom.   He was holding his crotch and cringing and I didn’t think he was going to make it home in time.   We pulled up in the driveway and I opened the door, telling him he could just pee in the yard.    When he got out, instead of going right where he was he ran over behind one specific bush in the front yard.   It was then I remembered he likes going behind this particular bush of late.     I’m glad he was able to make it home…and to his favorite bush.

The Tiny Girl Chronicles:  My daughter used some swim goggles today.   She liked them, not wanting to take them off.   I don’t know how she sees, but even with the goggle perimeter, the lack of corrective lenses and the fogging up of the surface, she was able to navigate around.    

Thursday, June 2, 2016

Crying Doesn’t Get You What You Want

This is a phrase my husband uses sometimes with my daughter.   She is a very happy child, unless she’s not.   For example, this morning there were cries and screams coming from upstairs where the two children were getting dressed for the morning.    We could hear from downstairs that my son had “touched my glasses!” which was apparently an unforgivable thing to do.   My son could have been intentionally doing it to bother his sister or he could equally have been trying to be helpful and hand her her glasses because she couldn’t tell where they were.  

We’ve been trying to balance the screams and cries and temper them where possible.   We are likely very guilty of worrying overly much about my daughter because she has been through a lot, can barely see, isn’t getting better visually yet in the surgical eye, needs help and oh—likes to cry to get her way.   All that factored in and we may have encouraged behavior we shouldn’t have.  

The other side is my son.   My son will resort to negative words and physical action against someone if he isn’t getting his way, is mad, doesn’t like what was said, etc.    He is working on controlling his feelings but he has a lot of strong emotions.    As a result, he gets verbally corrected frequently and we’re not always sure if we’re correcting on the appropriate side: him or his sister.

We’re trying to balance the power by giving my son more benefit of the doubt and not playing into my daughters, shall we say, “drama queen” behavior.    Parenting is an evolution and an education and an ever-changing landscape on which we, as parents live.  

The Big Boy Update:   Twice now my son has laid down on his back in the rain.   He seems to like the feeling of the droplets landing on his body.   Yesterday at the pool it started to rain fairly hard.  My daughter and our sitter, Morgan, headed under the building but my son preferred to lay down on the concrete instead.   Morgan called out to him saying he could put his blue goggles on so he could watch the rain hit his eyes.  He declined, saying, “yeah, but I only like the rain in this color world, not the blue-colored world.”

The Tiny Girl Chronicles:  My daughter’s friend, Keira, gave her some very frilly dresses she received as a gift some time back that were now too big.   These style dresses are definitely not Keira’s style and had never been worn.   My daughter who lately likes colorful dresses instead of shorts and t-shirts was very excited about them.   She wore one dress for two days she liked it so much.

Wednesday, June 1, 2016

The Knee Lock Discovery

After over sixteen hundred blog posts sometimes I don’t remember if I’ve written about something before and if so, in what detail.   That being said, if I’ve written about my strange knee locking issue before, this will be a review.   Get your pencils out, there will be a test at the end.

When I was a teen my knees would strangely lock.   Lock being a strong word—something would get displaced on the interior portion of the outside of my knee and while it technically wasn’t locked, my knee would scream very loudly to not unbend my leg or there would be hell to pay—in pain.

I’ve tried all sorts of things over the years, the primary thing being to never get into a position that would cause the locking to happen.   It happens infrequently and never when I’m near a doctor trained and qualified to be able to diagnose the situation.   It’s something soft-tissue related, likely cartilage.   As long as it doesn’t happen, I don’t really need to know what it is.  So step one has always been “avoid”.

Step two doesn’t get engaged until the knee gets locked, which it did last night while I was on the ground moving towards a standing position.  In the past the situation has been resolved mostly with me writhing around in pain, trying not to move the leg out of a seventy-five degree bent angle as I simultaneously try to press, pull, stretch, bend and yell at the knee in an effort to get it to release.

Sometimes it takes a few minutes, sometimes it’s over more quickly.   If things go well, it releases soundlessly and I breath heavily for a few minutes, glad I got out of the lock without the dreaded, “thwock” internal sound signaling a more forceful release.   I don’t know if and what damage might occur but silently unlocking seems like the better way to go from a knee preservation perspective.

Last night when my knee locked I started to panic.   As I began the to manipulate the knee I realized I was very tense in my leg and the more tense I got the more painful it became—so I did a test.   I stopped doing anything and just tried to relax.    I slowly started to unbend the knee once I was sure my leg was completely relaxed and to my great relief, the lock just calmly released as I did so, no thwock or sound whatsoever.

When my knee locks, relaxing is the last thing I feel like doing because pain with the prospect of more pain makes it hard to find a mental level of calm.   But it worked.   Next time, I have a new plan for helping the knee unlock.

The Big Boy Update:  We had some very intense rain the other day.   It was lightning and thundering and rain was pelting down.   Our children excitedly ran out on the porch to watch and talk about the rain.  My son called for me in a worried tone to come over to where he was looking.  He pointed  to one of the drainage pipes below our house that was gushing out water and said, “mom, this is very, very bad.   The planet is going to be flooded.”

The Tiny Girl Chronicles:  My daughter has been through a lot with her eyes.   She is just beginning to work through some of it with her play therapist and her music therapist.   In general, she shuts down and doesn’t want to talk about it at all when you ask her things.  She made up a very loud “mad song” and a melancholic “sad song” with her music therapist the other day.   She also said something to me in an offhanded comment unrelated to anything medical (it was probably when I was brushing her hair, which gets tangled).   She said, “that’s what grown-ups do, they hurt lots of people.”