Some Distressing News

Our children’s school went through a significant capital campaign over the last several years, culminating in the purchase of land and the building of a new school.   The location the school had resided at for the first thirteen years of operation was a small, old site on eight-tenths of an acre that was rented.   To give you an idea of how old the school buildings were, when I was a child, I attended preschool there forty-four years ago.

The school’s old location was put up for sale and purchased by a Goddard school who just recently tore down the buildings to build a new school.   My husband told my son and daughter this morning on the way to school the news about their old school buildings being demolished.   My son took the news harder than we anticipated.

This afternoon was my son’s end of year graduation celebration in which parents were welcomed into the classroom, the students performed songs they’d made up played on bells and an invitation to join the students having bread and butter they’d made in preparation of the celebration.   It was very Montessori and very special to the children as they politely invited us to have a seat and then served us food and engaged in conversation with the group.

In preparation, the students had made name cards for their parents so they’d know where to sit for the music presentation and then later at the tables for the snack.   Here are my son’s place cards, with his explanation of the drawings he added to each:

This is me with a remote control and dynamite blowing up the new school buildings they’re building.

This is me crying and a wrecking ball crane tearing down the new school buildings they’re building. 

I spoke with one of his teachers about how he was feeling and she said he’d told her this morning, after crying some (which is unlike him), “I’m really sad.   I haven’t felt this sad since my dog died.”

The Big Boy Update:  My son had an entirely different drawing on my name card for today’s graduation celebration.  He said, “that’s you with a double shot of coffee.”

  

The Tiny Girl Chronicles:  My daughter can see almost nothing, and then sometimes she can see something we don’t expect.   Yesterday we walked over to a bench and she said, “the bench is green”.  It was a dark shade of green I didn’t expect her to be able to discern.   She told me she saw the bench from far away.   I hope she did.

More Detachment

This post isn’t about my daughter, but about her Uncle Bob.  He had a sudden loss of vision in one of his eyes and on the recommendation of his ophthalmologist flew home last night.  This morning he was evaluated with a partially detached retina with a few tears.   Recommendation: surgery this afternoon.

Uncle Bob is doing well now.  He has a gas in his eye and has to lie on his stomach forty-five minutes out of every hour for the next day in order to have the gas rise and put pressure on the section of the retina the doctors worked on reattaching.   This is the exact opposite from what my daughter had done.   They added a heavy liquid substance to her eye and she had to lie on her back to get it to try and lay down her retina.

My son and daughter were very interested and concerned to hear about Uncle Bob’s eye as we are all very eye injury-aware here in this household.  Uncle Bob messaged us a short while ago saying he way laying over the edge of the bed, looking down at his phone to message us his status.  

I asked my daughter if she wanted to tell him anything and she said this, "I love you so much.  I hope you feel better.  I hope you'll be fine. And I wish we’ll get to see you soon at your house with zipper.”  Zipper is the cat my daughter very much wants to meet.

The Big Boy Update:  We were having smoothies this afternoon when my son got up off the bench and dashed almost to the street.   We almost got concerned but realized what he was doing when he picked up a stray shopping bag, held it up and said, “litter” while heading over to the trash can.

The Tiny Girl Chronicles:  We went to visit my daughter’s new school today.  My son went with us.   We met the other visually impaired student that will be in her class and her new VI and Orientation and Mobility teachers.   We got a tour of the school targeted at the two girls.    I think my daughter is going to like going to the new school.   She’s certainly excited about having a new friend who reads braille and uses a cane—the girls have already asked to have a play date together.

It’s No Longer Toast

Remember the saying about toast always landing butter side down?   Seems like the Mythbuster guys proved that one either true or false, I can’t remember but regardless, I have one that’s over and above worse percentage-wise.

USB plugs.   There are two little squares on the “top” (if there is such a thing as a top, I’m not sure) and two slightly different squares on the “bottom” side of the plugs.   The ports don’t seem to have any consistency across plugs and devices on which way they expect to be mated from a top or bottom preference.    But regardless, it feels like eight in ten tries I get it wrong, regardless of how many times I’ve mated the particular plug or device to it’s fellow USB partner.  

I like Lightning plugs, I don’t have to be smart OR observant to get them to work on the first try—every time.

The Big Boy Update:  While we were on vacation my son ate at a restaurant and got hives.   When it happens it’s not pretty.   His face gets red all around his mouth and large white bumps appear.  Sometimes there’s a secondary location, like the back of his knee, which happened the other night.   My son didn’t have anything we knew he was allergic to, dinner being an inconspicuous hamburger.   If we’re with our car we have Benadryl in the back but in this case we were a boat ride away from the vehicle.   He managed well with a bag of ice from the waitress and by the time we got back across the bay he’d gotten over it.    We’ve had some allergy tests run but not a complete workup, mostly nuts.  Fortunately reactions like the one the other day are uncommon.

The Tiny Girl Chronicles:  We ordered a blind cane for my daughter just like the one she uses with her Orientation and Mobility teacher.   She is going to have some extra sessions over the summer to help continue to build her skills until she starts school in the fall.

Imaginary Friends

My children were playing together in the car today.   Some of the playing is friendly, some of it is definitely not.   My son is still working on collaborative play instead of his preferred, “let me boss you around” play.    His sister tolerates this for a while and then decides she doesn’t want to play anymore.

They do a combination of imaginative play using characters and ideas mixed together in interesting ways.  For example, my son waved around a pipe cleaner (acting as a magic wand) and used the spall “alohomora” from Harry Potter (the unlocking spell) and proclaimed the Paw Patrol stuffed animal  had become a zombie.  To a five- and six-year-old this all makes perfect sense.

I was just happy they weren’t kicking and swinging at each other as I drifted off in the front seat when I heard them talk about Gigi and Ghadi, Palmer and Chainer.   These four characters were their imaginary friends for some time but have been abandoned for older pursuits in the past few years.

The Big Boy Update:   My son had his hand in his pants this morning and said, “my penis doesn’t have any balls…oh, there’s one…oh, there’s the other.”   Mystery solved.

The Tiny Girl Chronicles:  If this is any indication of how little to none my daughter can see at this point, she asked me today, “I want to listen to Peppa Pig on the iPad”.   She puts her face down or curls into a ball and just listens to the iPad.   She doesn’t even try to look anymore.   What surprised me was she changed from ‘look’ to ‘listen’ in her request.

The Elevator Activity

Finding meaningful things for my daughter to do to entertain her has been difficult in her most recent fully blind state.   She needs a lot of supervision, especially in surroundings she’s unfamiliar with but for the most part, continues to be positive and upbeat.

Today she discovered something that occupied her for hours—an elevator.   Our friend’s house has the living areas (kitchen, living room, dining room, deck etc.) on the second floor, overlooking the Chesapeake Bay and the owners decided to add in an elevator when they did an expansion some years ago.

My daughter learned how to find the call button, open the outside door, inside door and then find the floor she wanted to travel to when she got inside.  She would close the outer door, inner door and then  press the floor button—all in the dark because she didn’t care if the light was turned on.

She found out there was a front door for the second floor (marked floor three) and the same front door was used for the main floor (marked floor two) and then there was a back door for floor one, which was about two feet below the first floor providing ground level ramp access under the deck for anyone needing wheelchair access.  Floor one was particularly exciting because it opened out to the outside.

She would go up and down on the elevator and then take the stairs to let us know she’d travelled down and had walked back up again.  After a while she came out and told us she’d found braille in the elevator.

Here’s the thing, no one knew there was braille in the elevator, but she was correct.   My husband went in and she showed it to him and he told her it said ‘phone’.   She took me in later and I asked her if she’d opened up the door where it said ‘phone’ and she said she hadn’t and was surprised to find a phone with a dial tone inside.  

Just now before bedtime she wanted me to ride in the elevator with her.   She deftly found the call button, opened the doors, shut the doors and in complete dark found the button for the third floor immediately and knew exactly what to listen for to indicate when we’d arrived and she could open the doors to exit.

Being blind has got to be hard on her, but she learns some things so quickly it still amazes me.  

The Big Boy Update:  My son likes spending time on his iPad when it’s the weekend and he’s allowed.   This weekend the house we’re staying at is in a very small town and the owners, our good friends, don’t have wifi as this is a vacation home.  This morning my son came in and told me resolutely, “they don’t have wifi here, I don’t like this house.”

The Tiny Girl Chronicles:  We went to dinner tonight at a restaurant across the Chesapeake Bay.  We were in the boat about twenty minutes each way and my daughter wanted to drive.   Richard, our captain, gave my daughter instructions on when to turn left or right and how much to turn each tine (a little bit, a lot, etc.).  My daughter loved it and was dedicated to the job the entire trip.    She got the title of First Mate for her diligent work.

No Swimming

My daughter has a lot of things going on with her vision.   She’s lost her sight, which is burden and stress enough for any one person, but she’s got other things to contend with beyond that that make her life even more frustrating on top of the main vision loss issue.

She has to sleep propped up because of the hematoma in her eye.   She’s doing fairly well with this, but it’s not something she likes to do.   She’s very compliant and has been trying to help as best she can, even though she changes position while she sleeps at night.

She has to do drops up to twelve times each day, sometimes only two drops and sometimes five drops across both eyes.   They sting, they interrupt her play time and she doesn’t like doing them.   She has to have her glasses cleaned regularly because she touches her glasses and gets all sorts of things on them—she’s trying to keep from touching them but it’s something hard for her not to do apparently.

She can’t be hit in the eye, which means lots of things she finds fun, like swinging on the swings with her friends is a highly hazardous situation.   If she could see and could avoid the large, heavy, fast moving objects it would be one thing but she’s operating completely blind right now, not even able to tell colors accurately, which means she’s a very big danger around swings.

And she can’t swim.   This is temporary because of the recent surgery, but it’s not fun for her because she loves to swim.   We’re visiting friends on the Chesapeake Bay this weekend and they have a pool, but she can’t get her head wet.     Again, she’s working with the limitations, but it’s sad and frustrating for her.

She is also bored.   She can’t do so many things other, sighted children can do and what she can and wants to do she needs help to do much of the time.   It’s hard as a parent to limit her while trying to keep her entertained and occupied at the same time.   Hopefully she’ll regain some of her vision and freedom soon, but for now she’s dealing with it the best she can—and somehow keeping a positive attitude throughout.

The Big Boy Update:  My son still likes to keep his headphones on a lot of the time, even when they’re not producing sound for him.   It’s a sensory deprivation thing that he sometimes likes, even when he’s eating or when other people are around and talking.  

The Tiny Girl Chronicles:  We were on our friend’s boat today and went under a bridge on the way to dinner.   This particular bridge makes very interesting sounds when cars go over it.   Our friend went back under it a second time and stopped so we could all hear the cars going overhead.   My daughter liked listening to the different pitches of the cars, made by vehicles going over the bridge at different speeds.

Guide Dog Discussions

My daughter is having trouble coping with this most recent loss of vision.   To sum up, she is almost completely blind right now.   Hopefully some of the vision will be returned to her left eye, but for now she’s operating without sight.    This is hard for her because she doesn’t have all the skills she needs to move around without sight.

She’s been working with her teacher on learning cane skills, but she isn’t ready to have one on her own unassisted yet.    That was fine with her partial vision, but we’re getting her a cane to help right now and are hoping to get some additional instruction over the summer on appropriate cane use.   The trick with a cane at this age is bad habits are quick to be made and hard to break and as sighted adults, we have no idea what’s appropriate or inappropriate use.

We’ve had many people suggest a guide dog which sounds like an enticing option.   What we found out is a guide dog works on commands only.   The dog needs to be directed by the blind person, who knows where they want to go and how to get there.   The user must be in control at all times and give the dog appropriate commands and directions.   This means the user must be not only competent in Orientation and Mobility skills, they must have experience navigating around their world.

What a guide dog does is responsible for guiding the user around obstacles and indicating the location of steps and curbs.   Guide dogs are colorblind and can’t tell when a it’s safe to cross a street, the user indicates to the dog when it’s safe to cross based on crosswalk audio signals.

Should we as parents look into getting a guide dog for our daughter.   The answer we’re getting from the experts is absolutely not.  Most schools won’t accept an applicant under the age of sixteen to be trained and paired with one of their dogs.  Another decision is the child’s travel experience.   At sixteen, many blind children haven’t had enough travel experience to make an informed decision weather or not to use a guide dog.

Canes are very useful, give the user information about their surroundings, collapse and can be stored easily, are inexpensive and don’t require daily maintenance such as feeding.   The advice we’ve been given is placing a guide dog in the hands of a child is a disservice to both the animal and the child.

So for now we’re working on strengthening my daughter’s cane work and overall orientation and mobility.   Maybe when she’s older she’ll want a guide dog, we’ve got some time to find out.   Hopefully more than anything though she’ll have some of her vision returned so she won’t have a need.

The Big Boy Update:  We were in stopped traffic going to Maryland today.   In the middle of inching along my son said this about one of his classmates, “Benton had traffic like this one time, but worse.”

The Tiny Girl Chronicles:  My daughter is having a hard time of things lately, something I don’t blame her for at all, but we’re still going to have to place boundaries on her for appropriate behavior. She was mad at me yesterday and called me ‘stupid’.   I told her there would be consequences if she used that word to describe anyone again.    She thought about it and then told me, “and mom, you don’t look good.”