Mom, Now You’re Making Me Cry!

Some days I can handle my daughter’s loss of vision.   No, most days I can handle it; I can cope with the sadness and loss and frustration and worry—and then there are those few days when something happens that brings into focus just how severe her vision impairment is and I fall apart.  

If you’re thinking today was one of those days, you’d be close—it was yesterday.   We manage well at home and in familiar environments.   My daughter knows her environment well and can fool even all but the most observant of people into thinking she has more vision than she actually does.   She fools us, or perhaps we’re fooling ourselves, into seeing more than she’s seeing.

But take my child out of known environments and things can easily change from hopeful and positive into a reality check of how she functions in an unknown area.    Yesterday was one of those days.    We were walking home from a park and I was so happy my daughter had paid attention to the change in pavement color and hadn’t walked out into the street before listening for cars and waiting for us.   Then, she did a great job of seeing the yellow curb to step up onto the sidewalk.   As I was raising my hands to clap and praise her for seeing the curb, WHAM, she slammed her forehead into the stop sign post.

She was upset, but since I didn’t get overly worried, she recovered quickly and wanted to be put back down to walk.   We got home and about an hour later I saw my daughter with a cut on her face and blood across her cheek.    This was minor, but another bump from something she didn’t see.    Then, she couldn’t tell the grill tray was rotated out and in the line of the stairs and could have hit both her face and fallen down if things had gone differently.   Also, did she get close to touching the hot gas grill?   I couldn’t get information on that one, I think not, I think she could feel the heat, but she was figuring out where it was from what I could tell.

Three times my daughter ran into things—on her face and head in just a few hours.    Three times she needed an adult or someone else to help her navigate her world.    She is learning cane work, which will be the tool she needs (along with her hearing) to move through an environment independently and successfully, but she’s not there yet.   I want her to be able to see—at least enough to be safe.

I went into my room and broke down crying.   My daughter came in to find me a minute later.   I picked her up and she asked me why I was crying?   I told her I was sorry she hurt herself running into the pole today and that we always try to keep her safe.   I explained I was sad because I didn’t want her to be hurt.   Here’s the thing—my daughter was fine about the whole bump on the pole thing and the scratch on the face and the gas grill incident—but when she saw me crying, she immediately starting crying and said, “Mom, now you’re making me cry!”  

So I did what any parent would do in that situation, I pulled it together and told my daughter it was time to go do something fun and did she want to come with me?   Stopping crying, she said yes.

The Big Boy Update:  For no particular reason or discernible connection, my son said to Uncle Eric at breakfast. “the only metal that I like is elastic metal…and that’s it.”  It is now dinner time and to establish the veracity of this statement I just asked my son, “what is your favorite type of metal?”   Without pause he responded, “elastic”.  

The Tiny Girl Chronicles:   Today’s post wasn’t a particularly hopeful or positive one about my daughter’s vision.    I try to keep a positive attitude but I don’t succeed every day.   That doesn’t mean we’ve lost hope or that all hope is lost.

Crayons, Markers and Pencils, Oh My!

The first coloring implement children are typically given is crayons.   After a while you seem to be overflowing with crayons from restaurant four-packs that came home with any leftovers.   Crayons are clean, safe and not messy, making a great thing for young children to use.  

My children use colored pencils at school and prefer to use them at home for the most part.   They can make a mess on surfaces they’re not intended for, but with the proper expectations set, the mess is usually minimal.  

What the children really seem to like using is markers though, permanent markers are more exciting than washable ones.   The situation is compounded more when my daughter draws because she can’t see well and gets whatever she’s drawing all over her face in an effort to see what she’s drawing while she draws it.

This week I’m seeing if I can reintroduce crayons as a, “superior coloring tool”.   So far, my daughter hasn’t been too keen on crayons.

The Big Boy Update:   My son, upon hearing his cousin had three girlfriends coming over said in dismay, “What?  We already have two teenage girls, we don’t need three more of them!”

The Tiny Girl Chronicles:  I think my daughter can see very, very little most days but some days I’m proven wrong.   She wanted a bandaid and I let her see the picture of the little girl on the front.   She held it within an inch of her eye and asked me who she was and I replied I couldn’t remember.    About six hours later my daughter was playing something on her iPad and suddenly said, “Mom, I know!  I know who it is on the bandaid—it’s the girl in this app.”   She was completely correct, making a connection across an app and some bandages I’d gotten on eBay—both of which were Strawberry Shortcake.     So she can see some things, the question is just what and how?

The Falcon Wing Experience

We have a car with unusual second row doors—they open upwards instead of outwards.  They’re called, “Falcon Wing Doors” instead of the traditional, “Gull Wing Doors” because they have a hinge point in the middle of the door, enabling them to open in more confined spaces by opening upwards first and then outwards once they’ve cleared any obstacles.

And while the doors are interesting and different, once you’re used to them it’s just another day getting in and out of your car to your family members.    What is different with our Tesla Model X is the novelty of the upward-opening doors combined with the hype Tesla Motors has gained in recent years, and we have a car people like to ask questions about.

Commonly, people want to know if it’s a Tesla and if so, how do we like it?   What model is it and how many different cars does Tesla make, is another question we get commonly.   “Can I look inside”,  (asked while we have the doors open to let the children out and it’s hard not to see inside).   “Do you love it?”, is one of my favorite questions.  

Provided I’m not late or have an issue with a child, I’m always happy to answer questions.   People generally understand you don’t have all day to talk when you have two young children, ready to run out into traffic at a moment’s notice, so conversations are usually short but positive, sometimes with pictures of the big screen or the falcon wing doors open—never with us in it, we’re strangers, people are more interested in the car.

It’s fun to build excitement about electric cars and talk to people.    Without the Falcon Wing doors I think our car would go largely unnoticed.  

The Big Boy Update:  My nephew, Kyle, has a girlfriend named Madison.   They have been together for quite some time and yet my son thinks he has a chance with her.    Earlier today when Madison was mention and described as, “Kyle’s girlfriend”, my son interrupted and said firmly, “no, she’s part Kyle’s girlfriend and part mine.”

The Tiny Girl Chronicles:  This morning I was asleep and the other people in the house were either asleep or were out.   My husband came back, having gone on a donut fetching expedition, to find my daughter eating potato chips at seven o’clock in the morning for breakfast.   When he asked her about them she said, “well, I’m in charge of the food since there are no grownups around.”




 

Supercharger Adventure

We’ve been planning our first long trip in our electric car with the children.   As of today, there needs to be a little more planning than we would have done with an ICE (Internal Combustion Engine) car like our minivan.   Gas stations are far more prevalent than EV chargers.   But times are changing and charging stations continue to multiply across the nation.

There are tools online to make planning a trip with an electric car easier.   The most comprehensive site is evtripplanner.com which takes into account things such as your car make, model, tire size, how much over the speed limit you plan on driving, the outside temperature, what temperature you intend to keep the interior of the car and elevation.  

After entering in all the specifics of your car and trip destination the site creates a suggested route, including which charging stations to stop at and how many minutes you need to charge at each station.   For our upcoming trip to visit family in New Jersey, we’ll be taking a different route than we have in past years.   We’re also going to take a ferry, which the children are excited about.

The total trip time is a little longer from the plan we’ve mapped out, but the route avoids all the large cities and their traffic, which has extended our drive by multiple hours before.   The other thing we’ve had to factor in is our departure time.  The Tesla Superchargers are in specific locations, typically beside food and other retail.    We picked departure time so that we would arrive at a charging stop at or around lunch time.   My husband looked at the ferry times so we could coordinate with ferry departure times.

We can easily make the trip with three charge stops, two at fifteen minutes and one long charge at thirty-nine minutes (which we’ll use for our lunch stop).    We’ll know soon how it goes; the whole family is excited about taking a long trip in our “flying car”.

The Big Boy Update:  My son is very excited about going to visit his cousins.    Every morning they want it to be the day we leave.    This morning my son came to the edge of our bed at six-thirty and simply said, “I’m ready”.   I knew exactly what he was ready for.

The Tiny Girl Chronicles:  Update on the nighttime underpants—success.   My daughter has been in underwear now for about two weeks.   Only one night did she have an accident and that was because we missed waking her up around midnight to go to the bathroom.   Soon I don’t think she’ll need to be woken up.   She’s made the transition easily.

The Right Words

I’ve talked about my son recently including his anxiety, low self-esteem and penmanship challenges.   We are fortunate to be working with some skilled and knowledgeable professionals who are helping us work with him.    The news is there is good news—things are improving, and improving quickly.

Dhruti, our play therapist, said we would be able to see significant changes in only a few months.   Some of what needed to happen was to help my son learn how to work within his mind to organize it and understand what emotions he was experiencing.   But the more and more we work through what’s happening, the more I realize the large part of the burden is on us, as parents, to change how we interact with him.

For instance, we have a calendar to help him understand what’s happening in the coming month.   We review in advance each day’s schedule with him and we give him choices in specific ways, using certain phrases, while not letting him (or expecting him more specifically) to make other choices.   We’ve been helping him understand collaborative play and how to identify emotions and be aware of how emotions affect his behavior.  

The thing that’s been more impactful than anything though is the words we’re using when we talk to him.    My son seemed to always be getting in trouble, trying to do the wrong thing, pushing to get something more or something he shouldn’t have.   He was in what seemed to be a perpetual state of being corrected.    The interesting thing is, all that correcting, saying no, telling him he’s doing the wrong thing and removing privileges was not helping, in fact, it was causing the problem in the first place.

I’m starting to understand my son and I’m able to work with him, using slightly different words and tone than I had before.   The result is he’s starting to feel understood himself and the result on his end is he’s not pushing, not acting out, not intentionally doing the wrong thing.    He’s turning into a kind, generous person who says nice things instead of insults—and it’s largely in part because of the words we’re using.

Now that I have a better idea what’s going on, I’ve started seeing things from his perspective.   For example, tonight at dinner he was eating spaghetti at a restaurant.    He was using his fork, but his hand was involved to help get the buttery spaghetti into his mouth.   He was leaning over the plate, but not one hundred percent of the time so some got in his lap.   He was using his napkin, but only sporadically.     What did he hear from the adults though?   About fifteen times he was told he wasn’t doing something right or well.  

And yes, he wasn’t doing it perfectly, but if I were in his place, the message I would have gotten was I couldn’t do anything right, so why bother.   My heart was breaking for the little guy and I added positive and supportive comments and gave him a big secret smile from down the table.  

I’m still learning about which words are the right words to use in a situation.   In the above example, what words are better for encouraging a child to lean over the plate, use the napkin and don’t make a mess?   We, as parents, want a certain result and we do expect children to work towards improving their skills as well as behaving appropriately.    I feel if I could have the right words in every situation, he would be a much happier child.  

The Big Boy Update:  My son was offered some calamari at dinner tonight.   I don’t think he really wanted to try it because he told Grandpa, “if I hold it I’ll throw it in your face, and I don’t want to throw it in your face.”

The Tiny Girl Chronicles:   My daughter and husband have some game called, “The Tickle Game” that I have yet to see.   Someday I’m going to peek around the corner to see how it’s played out because the amount of laughter that happens is pretty impressive.

The Tooth

My daughter has a tooth that wasn’t formed normally.   We were told by her dentist it was going to be a concern for a cavity and as such we’ve been working hard on the brushing and flossing.    Ay daughter is an expert in flossing—she will tell you exactly how many teeth she has on the top and bottom every night.   It is important to note the numbers never match and they change from night to night.   Asking, “are you sure?” is always met with an affirmative response from my daughter.

A week or so ago my daughter started talking about the tooth, saying it hurt.   She flossed it for so long one night last week her gums were bleeding.   So we made an appointment with her dentist and today she went for tooth repairs.

She got a special gas mask and then had some, “silly jelly” to put on the area around the tooth.   After that was the needle, which she didn’t like, but hey, who does.    After that the dentist looked at the tooth and said the decay was extensive.   She recommended a crown.  

I can tell you this, I am not thrilled about my four-year-old having a crown.   We’ve been trying to have good dental hygiene with the children, but be that as it may, she had a decayed tooth that was hurting her.

She has a, “princess crown” or a, “fairy tooth” now.   It was bothering her a bit this afternoon but hopefully she’ll be fine in the morning.

The Big Boy Update:  I try to let my children do the talking when we’re in the car.  This morning as we were driving to camp my son suddenly said, “guess who is my number one friend?  Ryuichi.   And my number two friend is Yukina.”   After he finished, my daughter who is in the middle of the “me too” said they were her number one and number two friends too.

The Tiny Girl Chronicles:   My daughter started twirling her hair around her ear as a stress reaction after losing her vision.   It went on for months and then, apparently it stopped.   I had forgotten all about it until last night when I watched her putting some errant hair behind her ear to get it out of the way.

Right Handed

My son saw his occupational therapist, Bethany, today.  I’d mentioned last week how we’d been doing some tests to see which hand was his dominant or more skilled hand to determine which hand he should write with.   Bethany agreed the results didn’t indicate a strong reason to move from his left hand to his right and sometimes it seemed better to leave things as they are but she would see how the session went today.

When she came out she told me he was switching hands frequently in the activities (painting, scooping, drawing) and said the reason was his hand was getting tired.   Bethany asked him which hand he preferred using and he told her his right hand.   She asked him several more times in various ways and he always said he wanted to use his right hand.

They spent the rest of the session with him using his right hand.   Frequently, when he would start to switch hands, Bethany would remind him he wanted to use his right hand and give him some tips on how to stretch and shake his hand while taking a quick break so his hand would be refreshed.

So as of today, we’re moving forward with a right-handed son instead of a left-handed one.   I’ll report back in a few weeks and tell you how it’s going.

The Big Boy Update:  My son created a “love spot” in the corner of their play room.  For the longest time the children weren’t that interested in stuffed animals but now they’re in high demand.   My son piled all of the stuffed animals into this one corner and flouncing on it told us, “this is my love spot.”  He also told us he has a sad spot and an angry spot, but right then he was all about the love spot.

The Tiny Girl Chronicles:  My daughter has discovered how to lock the doors in our house.   Not the outside doors, the inside ones with the little button on the them to keep people out of your bedroom.   She’s been very interested in which doors have locks and which don’t.   She didn’t understand why there wasn’t a lock on the inside of her closet door for example.    This afternoon marked the first time she locked herself in somewhere (the potty) because she wanted some privacy.   When she was done, she opened the door and came right out.