Bad Parent

I feel like a bad parent some days.   I think probably all parents do.   I don’t know if it’s the whining from my daughter or my son being defiant or what, but I don’t handle situations in the way I want to. Dhruti’s said studies show you only have to get it right thirty percent of the time as a parent for your child to turn out just fine.   I suppose my expectation for myself is higher than that though.

The Big Boy Update:  My son isn’t interested in doing tumbling anymore.   He’s asked if he can try the tricking class, which we’ll take him to next week.   If that isn’t interesting to him we may look into something else like Tai Quon Do.

The Tiny Girl Chronicles:  My daughter wanted to type on the computer today.   She’s learning keyboard layout and will type based on the location of the keys as she gets older.   There’s an app called, Talking Typer, from the American Publishing House for the Blind that is target at visually impaired people.   She had fun with it this afternoon for a good while.

Fun Run

My daughter’s public school does a single fundraiser each year.   The two years we’ve been at the school it’s been a fun run of thirty five laps and some education on a one or more topics during the two weeks for the students in which the fundraising occurs.   My daughter is excited about this year mostly because last year she had such a good time.

We weren’t involved with the at school events last year but we came for the run portion of the event.   Parents, family and friends can pledge a per lap amount for up to thirty-five laps my daughter might run.   We weren’t certain how the running would play out last year so I asked one of the teachers about it before the event.   She said the “laps” were short and the event was set up so all of the children could be successful at the event and make the full distance.

When we got there last year each child had a t-shirt on for the event and teachers were waiting with sharpies ready to mark off a check box for each lap as the child ran past.   Today, coincidentally, for the start of this year’s boosterthon, my daughter wore her fully checked off shirt from last year’s event to school.  

Last year my daughter raised enough money (thanks family!) to have the privilege of “pieing” the principal.   This year she’s heard you get to silly string the principal if you raise enough and after getting a taste for victory from last year, she’s gunning for the honor again this year.  

On the way home in the car this afternoon, my daughter asked if I could send her pledge page information to her cousins, aunts, uncles and grandparents.   She’s pretty excited about the whole event.   She’s even planning on writing thank you notes on her braillewriter.   She told me, “I just can’t wait for two weeks to be over so I can do the run with my friends.”  

I’ve never been this excited about fundraising.  I’m glad she is.

The Big Boy Update:  My husband taught my son some workout activities tonight.   My son and he wrote up a full regime for the coming week, including: burpees, wall squats, planks…and the worm.   Not sure about that last one being a typical fitness exercise, but it is tiring.

The Tiny Girl Chronicles:  Remember when my daughter climbed the door frames so much it made her hands bleed?   She doesn’t do that at all anymore—she has a new obsession: her purple ball.   It’s a purple yoga ball and she won’t go anywhere without it.   And it’s annoying because she wants to eat on it, brush her teeth on it, do eye drops on it and has even asked to have it in her bed at night.   She just lost it apparently due to behavior because I hear her wailing over and over, “purple ball!  purple ball!” in their bedroom while my husband works on getting them calmed down for bed.

Lazy

I haven’t felt this lazy in a long time.   I’m off the medication but I have very little energy and no appetite.   When I eat I get nauseated.   But things are getting better.   I feel sort of depressed because this is a mess to go through.   I can’t give up now though.   It’s getting better.

What’s bothering me more than anything is I’m not helping with the children as much as I would normally.  My husband and I split things even for the most part, but he’s been doing more than I have it feels like for a week now.    He doesn’t seem to mind.   He’s really something.

The Big Boy Update:  My son and I went to McDonald’s before school this morning.   I was taking him and I had to eat something and I was hopeful I could get a whole biscuit down.   We had a nice breakfast together.   He’s fun.

The Tiny Girl Chronicles:  My daughter had her school picture taken yesterday.   And she was unhappy about it.   I didn’t know this, but as much as she wants pictures taken of things, she doesn’t want pictures taken of her.  

Bleh

I think the worst of the nerve medication withdrawals are over.   But it’s hard to say.   What I can say is this isn’t anything like going through opioid detox.   That’s nasty.   Very nasty.   I’ve done that twice before and it takes weeks and weeks for your system to reset after being on sustained doses of narcotics for over a year.   But even so, this isn’t fun.

I’ve been eight days now without any nerve medication.   It’s hard to tell what is nerve pain I’m stuck with and what’s rebound pain from being on nerve medication for a long time.   I’ve decreased the dosage appropriately and now I’m on none.   So what’s the real pain and what’s rebound pain?  I don’t think I can say yet.  

I feel a general sense of malaise along with pain.   I deal with pain all the time, but in this case, the medication that makes the pain better is the thing I’m stopping.  So I just have to tough it out and see what my baseline is on the other side.   I’m dealing more with lack of appetite and lack of energy, which isn’t helpful when there are young children around who need you to be available to help them with all manner of things like, “where is my bike helmet?” and six rounds of drops per day and “get your pajamas on now, for the third time, it’s past bedtime”.  That sort of thing, only all day.

Fortunately today was the first day of school for my son, so both children are not home during the day and I’ve gotten some rest.   Things are better than they were though, which is a good sign for tomorrow and the next day. 

The Big Boy Update:  My son got dressed up in costume after school today.   He decided to be a villain or something and made jagged cut marks on his face and arms in—wait for it—red sharpie.   It looks pretty convincing for entry level scarification makeup.   Getting it off for school tomorrow might be a trick though.

The Tiny Girl Chronicles:  My daughter came home saying, “WORST…DAY…EVER!”  It would appear she missed her entire time in the VI room to be with her Orientation and Mobility teacher, whom she typically enjoys seeing.   Her new VI teacher has made quite an impression on her and I think she loves doing work with her so much she didn’t want to miss a day.   She also gets chocolate if she meets a challenge or wins a game—and my daughter is very chocolate driven.  I got a note home that we need to get a 38” cane because my daughter has grown and her 36” canes are too short. This is always fun because you can order them with all sorts of colors.   

Written By My Daughter

Tonight’s blog post has been written by my daughter.   She didn’t know she was going to be writing it, but when she came home with what she wrote during the half-hour writing time today, I couldn’t resist.   Her topic was what we did as a family yesterday.

Here’s a quiz to determine your reading comprehension of my daughter’s writing:
1) What is her brother allergic to?  Cats
2) What medicine did her brother take because of his allergy?  Benadryl
3) Where did we go to eat after seeing the cats at Uncle Jonathan and Margaret’s?  Pizza
4) What negative behavior did her brother exhibit?  He had a tantrum and sounded like a baby.
5) What items did she and her brother pick when we got home?  Dessert (popsicles)

The Big Boy Update:  My son said he wasn’t coming out of his room until two weeks had passed and he got screens back.    He came out ten minutes later and he’s had a good day doing other things.

The Tiny Girl Chronicles:  My daughter has had a lot of homework sent home.   Doing the homework isn’t the challenging part.  It’s me, figuring out how to do it.   The original homework is sent that describes what to do for the sighted students.   Then, there is a second version of the assignment for my daughter to accommodate for her vision.  They send home the instructions translated into braille as well, which is nice, but I have to decipher it (translate it) to figure out what is just a braille copy and what I need to know to help her do the homework itself.   Typically it takes very little time to do the homework and a lot of time for me to figure it out.   I’m getting a lot of practice in braille, thought.

Really Not Fun

I take a nerve medication for the nerve pain that’s a result of spinal cord damage I’ve had over the years.   I’ve had two spinal fusions and have been through most medical options to address and alleviate the pain and symptoms.   After the fusion it took about three years for the nerves and pain to diminish so I could get off the arsenal of medication I was on.  

But the degeneration in my spine didn’t end and I have issues that continue to increase every year.   I started about five years ago on a nerve medication and over time I’ve had to increase the dosage.   Every now and then I titrate off it to see if I need the amount I’m taking or if I can manage with less.    The last time I did this was about a year-and-a-half ago.  

I reckoned it was time to try again.  I’m at a higher daily dosage now, but the titration schedule isn’t prolonged.   I started on the fifth of this month and was doing fairly well until I got to the zero medication mark.   Twenty-four hours later and everything is magnified.   It’s like pain with the flu and nausea.   Okay, maybe not that bad all the time, but it has its moments.

I can’t tell how much nerve medication I need until my nerves calm down though.   So I’m sort of a blob right now, not doing much and spending far too much time in bed, uncomfortable but with no energy to do much else.

I am hoping today, day six with nothing, will be the last of the bad days.   I think things are a little better this evening.   With that being said though, I’m getting back in bed after writing this.

The Big Boy Update:  We went to Uncle Jonathan and Margaret’s house today to meet Elvis and Peekaboo, their cats.   My son is allergic to cats, so we gave him some Benadryl and he was fine.   But it must have made him cranky.   He couldn’t handle anything in the car, ultimately threatening (twice) to get a knife from the knife block and stab or cut one of us when he got home.  He lost screens for a week each time—which made him exceptionally upset.   He was about to loose them anyway though as tomorrow is the last day of summer for him.    He needs a break.

The Tiny Girl Chronicles:  My daughter loved petting Peekaboo, Margaret’s cat, today.   Peekaboo was very friendly, especially since small children move quickly and my daughter isn’t that knowledgeable on how to pet a cat.    Margaret said we could come back and spend more time with Peekaboo soon.

Duck Duck Goose

We had a group of children in the house earlier today.   I’m not sure how many, because they were upstairs, and you can’t really tell by volume, because any more than two and they sound like a cacophony, but it was a good number.  

They decided to play Duck, Duck, Goose.   They were taking turns being “it” and having a good time all around.   Then, it was my daughter’s turn to be “it”.   She would have virtually no chance to catch anyone because she wouldn’t know where they’d run off to, but my son had an idea: he said, “let’s move slow”.

And they all did, which gave my daughter a fair shake during her turn.   He’s a considerate brother and he has very good ideas sometimes.

The Big Boy Update:  My son showed Mimi Mario Maker today.  I’m not sure if she played with him or just watched him play, but I think he enjoyed spending time with her.

The Tiny Girl Update:  My daughter has Ice Cream Truck ears.   Well, she has ears that hear most things before the rest of us or when the rest of us don’t notice it.   Today she heard the ice cream truck from way around the corner in our neighborhood.   The rest of the children ran into the house, screaming, “ICE CREAM TRUCK!”   It was only an hour before dinner, but sometimes you have to have dessert first.

Bowling and a Wedding

My son wanted to go bowling today.   He and my husband went and I think they both had a good time.   I was running errands for part of the time, going to the library for the blind and physically handicapped to return and exchange the audio books my daughter has been listening to on the player we’ve checked out for her.   She wasn’t interested in listening to books at all for a long time, but then just recently she became interested and has gone through the three books we had checked out.

The staff member at the library said he could increase our book limit from three to six and he increased the reading level (or hearing level?) by a few years so the stories would be longer and more interesting to my daughter.

After that, I went to get the car cleaned.   My husband saw a post on the local Tesla forum, asking if anyone had a white Model X that would be interested in driving them off after the reception at their wedding?   And while we don’t know the couple or any of the people in the wedding, it sounded like fun, so my husband replied that he could be the driver.

So I got the car cleaned.   Jiri (pronounced Yuri) who cleans my cars, told me it was the dirtiest I’d ever brought it to him.   So now the car is cleaned and ready to be the getaway car in a wedding.   My husband will drive them from the reception to the hotel this evening at the end of their reception.

I’m off to a ladies overnight with three of my girlfriends.   We don’t get a chance to catch up often and we always have fun together so I’m looking forward to the evening.    Speaking of, I’d better pack up and head over to the hotel shortly.

The Big Boy Update:  My son had a good time bowling today.   He’s possibly interested in joining a league for children.   I asked my husband if my daughter might want to bowl too.   She wouldn’t need to see much if they had the bumpers up—she just has to launch the ball down the lane.    We’ll have to take the two of them together and see if they both like it enough to do it on a regular basis.

The Tiny Girl Chronicles:  My daughter likes to listen to “bedtime stories” on the Amazon Echo.   She’s listened to the five-minute stories several times each, but she doesn’t mind hearing them again. It surprised me then that she wasn’t interested in listening to the audio books from the library more than once.   But nope, she was firm in wanting more books.   I have six new books for her when she gets home from school today.

Flush Share

My son said something tonight that he may have made up.   With children it’s hard to know if they’ve made up something by putting words they know together in a way that’s not typically used in English, or if it’s something clever they’ve heard elsewhere that you mistakenly give your child credit for.   In this case though, I’m not sure where he might have heard the phrase before…

We had decided to watch the first Avengers movie with the children tonight.  And when I say “watch the movie” there are various levels of accuracy with that statement.   My son most definitely was watching it and my husband was both watching it and describing it—to my daughter who couldn’t watch it, but was keen to listen and ask questions about what was happening.

I was doing the not-watching thing I do most often when a movie is playing at my house.   I was not watching the movie in the next room on a board conference call.   When I got done though I did come out and did some half watching while I put up the dishes.

After we’d turned the television off we all went upstairs to get the children in bed.   My son was very interested in some idea or question or thought he had about the movie and followed my husband into the bathroom to continue exposing on his idea.   When he realized his father had gone in to actually use the bathroom he was completely unfazed, only stopping his story briefly to say, “hey dad, share flush, I gotta go too.”

This is not a phrase we use in our household, although I quite like it.   So did he hear it or did he make it up?

The Big Boy Update:  My son ate a huge lunch.   He waited for me to bring him Biscuitville after going to the dentist.   He ate more in a single setting than I’ve seen him eat in a long time.   Three pancakes, bacon, eggs and a biscuit.   Tonight at dinner he wasn’t as hungry as he usually is.   He said something interesting though when he explained about being full.   He said, “I don’t really get full at lunch.”  I don’t know if there’s not enough time at school or if we don’t serve him enough.  I’m going to have to ask him about this more as I’ve got to start packing lunches for him in less than a week when school starts again.

The Tiny Girl Chronicles:  My daughter and I were doing some spelling homework tonight (she asks to do homework).   I was calling out words and she was typing them faster than I could hope to write them by hand when she said, “can I tell you something?  Whitaker has a crush on me.”   Whitaker is a year-and-a-half younger than my daughter and lives next door.   I asked her how she knew.   She said her brother had found out, but that she wasn’t suppose to know.   I told her I wouldn’t tell anyone.   Which means I NEVER WROTE THIS.

Writing is Not Reading

Learning braille has been fairly fun so far.   It’s been something to bond over with my daughter (and she and I could use a little positive bonding right now).   It’s also like a secret code that not a lot of people can read.  

I started the contracted braille class recently, but haven’t been able to dedicate much time to the curriculum because I’ve been trying to catch up on the other braille I keep encountering via my daughter and her school work.

Everything she’s working on in school has to be translated into a medium she can understand, which mostly means braille.    This means not only the completed work she’s done (write five sentences about The Little Red Hen), but also the original material itself (the Little Red Hen short story).

If it were in print matter, I would scan it quickly, look at what my daughter did for the assignment and then recycle it, or if it was particularly cute, keep it in her folder.   The original copies are usually sent with the braille versions, but the only way I’m going to get good at braille is by practicing, so I’ve been going through everything and reading it—slowly.

What’s been interesting to me is that reading braille and writing braille are two different skills in the brain.   I can write braille much more easily than I can read braille.    When I’m done writing something up, if I go back and look at it,  I have to go through the same, slow, reading process as anything else written in braille, because my brain isn’t translating that fast in the braille to print direction.

This isn’t uncommon a think when learning a written language.   I remember watching my son build sentences using something called a “moveable alphabet” in Children’s House at school.   He would spell out words to make a sentence in plastic letters.    But when he was done, he’d have to work through it again to figure out what he’d written.  

This wasn’t a fast process—It could take several days to write a few sentences about the planets, so by the time he was done, he didn’t remember what he’d started writing.   I feel a bit like I’m looking at a huge array of dots on a page.   When I’m just at the right spot, I know where I am and can read.   But if I’m interrupted, the page goes from words and letters back to a collection of dots.    But I’m getting faster and it’s getting easier.

The Big Boy Update:  My son started a new bit of homework this week via the Xtra Math app.  It tests him on math problems and changes the following days work based on what he got right and wrong in the prior days.   He’s seeing a grid of addition problems now that is turning more and more green as he’s getting more correct more quickly—and that’s encouraging to him.    He even likes doing it I think.

The Tiny Girl Chronicles:  My daughter and I had a hard time this morning and then again this afternoon.   She is having a hard time, but she’s being infernally difficult.   She’s seeing Dhruti, which I think is helping, but I feel like I keep failing her.   She’s having a hard time, but she’s acting like a spoiled brat.   The question is, which is it?   We aren’t letting her get away with bad behavior, but is her pushing and being defiant related to her fear and anxiety?

A Bigger Desk

We have this small, child’s table in our breakfast room.   It houses my daughter’s braille writer, which is heavy and large like a typewriter.   The brailler needed paper to go with it, so paper was added to the table, and then sharpies for drawing and then other types of paper, scissors, glue stick, note pads and all of this was fully covering the table, not leaving any room to get anything done other than type braille.

So I added a second child’s table.   That table was meant to be used to get things like drawing, cutting and gluing done.   But that table got crowded too with materials and supplies.   Fortunately, there was the breakfast table, on which most of the work was being done anyway, especially when other children were over and they were all working together.

And then my daughter’s Tactile Graphics Kit came in the mail two days ago.  It’s tools that emboss shapes, lines and patterns onto paper.   Braille is good for writing, this is good for drawing things so they’re tactile.   My daughter saved up her stamps and wanted this kit, which is typically for teachers or older children.   She was firm though, that’s the thing she wanted to spend it on though.

That tactile kit was sort of the last straw though.   There was just no more space left to shove things on the two small children’s desks.   So my daughter and I moved her today.   She said her brother had his own desk in the side storage room of their bedroom.   It’s his father’s desk from when he was young.   It’s infrequently used by my son, but it is “his desk” so we decided to give my daughter a full-sized desk in the bonus room.

She had ideas about what to do with the desk, which mostly involved rearranging a lot of the furniture in the bonus room.   The rearrangement put things back the way they had been in the past and did make sense with our plans for one of the small, children’s tables from the breakfast room to be brought upstairs for only brailling (no other crammed stuff).   That left the adult-sized desk free for all the supplies needed to do everything else.

I filled drawers and a storage tower full of supplies, added a lamp and then showed my daughter around the new space so she knew where everything was (braille paper in the top bin, scissors in the first section in the top drawer, etc.).  Then, with it all set up, she and I worked on our homework together.

The Big Boy Update:  My son had two friends over yesterday.  They came over and went up to the bonus room to play video games at the same time as my son was working on his homework.   I told my son I didn’t think it was a good idea, since he had a hard time concentrating.   But no, he said he could do it.   He took his homework upstairs into the room with them and then, in a short while, he came down to have me check his homework—and he had done quite a good job.   I asked him how he did it, thinking the “stonework” wall would have had no chance in staying up with the commotion and distraction of his friends.   He was fairly pleased about it he sounded though as he told me, “I actually installed a roof.”   I told him I didn’t know how he did it, but it really worked well, good thinking.

The Tiny Girl Chronicles:  My daughter went to school on Monday with a skort she had clearly outgrown.   When I saw her tugging at the crotch more than once before school I tried to get her to change, but she wasn’t interested at all.   After school she was doing the same thing, pulling down the shorts part under the skirt.   I told her I was going to retire it after tonight.   She was not at all happy about this (she never wants to let go of anything) so I told her we would have a place we could store it to remember it by.   She seemed fine with that.  I think after thinking about it she decided it would be okay, saying, “my vagina’s all worn out today.”

What We Did In The Mountains

Work came home from my daughter today.   She apparently just types things on her mind when she has free time at the end of the day.   This is a fairly good explanation of what happened on our mountains trip to visit my parents from her perspective:

There was a third page but it gets into the confusing specifics of a game on her iPad that maybe Mimi can explain since she was playing it with her.   Note that Marissa, her braillest, has translated what my daughter wrote exactly, letter for letter including punctuation.   Some of the words I din’t know if my daughter has learned yet, but she’s phonetically spelling them out.

I don’t know about you, but I wasn’t writing this much and this clearly at the start of first grade.   It’s impressive how much education has advanced since when I was my daughter’s age.

The Big Boy Update:  My husband and I went out to lunch with my son today.   It’s very interesting having only one child with you and having a child who doesn’t need to be escorted across the street or other things related to low vision.  We had a good time with him at lunch.   He told us about a lot of things.   He’s a pretty interesting little human.   We need to make sure we spend enough time with him alone.   His sister by necessity has to have more help in some cases, but he’s just as important to us.

The Tiny Girl Chronicles:  My daughter came into the bathroom this morning and fell on the floor in a ball.   She told me, “I’m so disappointed; Nana is going to play a video game with my brother and I have to go to school.”   My son hasn’t started school yet and Nana was going to spend some time (watching him) while my husband and I had a meeting coming up.  Nana explained that she would be spending time with just her too coming up soon and I think my daughter was okay about it.

Good Night

My daughter’s been back to school for close to three weeks now.   My son spends his last week at home for the summer starting tomorrow.   For now, both children are with my in-laws, probably out on their boat on the lake they live on.   It was overcast earlier today but now it’s sunny.   If it’s any indication of the prior visits, my children won’t have missed us at all when they get home.  

Come to think of it, one thing we’ve never done with the children is call at the end of the night to say good night.   We haven’t done it when one of us is away, say for instance with my daughter in Detroit.   We don’t call when an adult is away like my husband being off at a golf tournament or when I’m at a ladies overnight.   We just don’t do good night calls.

I think it’s mostly because we know whoever the children are with at the time, they’re having a good time with and are being well cared for.   In other part we don’t want the children to not be able to go to sleep without talking to one of us or their sibling.   Yes, we do make calls and it’s always fun to hear what’s been happening to the other people when we do, it’s just not expected.

Some of my favorite calls have been when one of us is with my daughter in Detroit.    She and her brother want to talk to each other and the conversations they have are very endearing and somehow very mature sounding.  

My children come back in a few hours.  We didn’t talk to them this weekend after they left but I’m sure they’ll have lots to tell us when they get home.

No Input:  My in-laws haven’t sent me any cute, funny or interesting updates on what’s been happening with the children this weekend so I’ll have to do some updates based on what we find out when they return later.   I’m not minding so much; I know they’re having a good time.

Strippers?

My husband and I got invited to a fortieth birthday party this evening.   It was one of those things with people at the school your children go to so you look at the evite to see who else is invited.   You look to see how many people are invited and who’s already RSVP’d yes and no.    You look at your calendar and then, weighing all factors, decide if you’re going. 

This party was interesting I thought because it was rather small.   It was being thrown for one of the staff at school that we’ve known for six years now but haven’t done much with socially outside the school.    The other list of invitees were mostly staff and a few parents.   But on the whole, not a social group that had ever been together before in that configuration.  

We knew every one of the invitees, but I was wondering why we got invited versus some of the other parents?   You know how you feel like you made some sort of cut because you made the list?   It was a bit like that.   With my in-laws having the children, my husband signed up for a vegetarian side dish we marked us down as attending.  

The party was low key and friendly with everyone moving around and having a chance to socialize with everyone else.   The person for whom the birthday party was being given was saying, “and there had better be no strippers at this party!”   She said she wouldn’t put it past her husband, and then she looked around the room at each of the ladies there and told us if she thought we’d be “in” or “out” if there was a plot to bring a stripper to her fortieth birthday party. 

She looked at me and said, “you’d totally be in.”   I said, “not only would I be in, I’d line up the stripper and I’d work with Charlotte over there because I bet she knows people.”   

As we left around ten o’clock I told her I was sorry I was going to have to miss the stripper(s) but it was late and it was past my bedtime.   I said that’s what happens when you get over forty…

The Big Boy Update:  Nana called me today saying my son just had to have an app on his iPad,.   This mean my son had seen a commercial and decided he couldn’t live without it.   Thankfully a lot of things are try and buy with micro transactions these days so I said sure.   While we were on the phone I authorized it on my iPad and then Nana said, “oh, I see it’s available for download now.  But you can’t play it until we get back from the boat ride.”

The Tiny Girl Chronicles:  My husband recently upgraded two of our Amazon Alexa’s to have screens.   There’s a tiny one beside his bed and a big one in the kitchen.   When my daughter realized you could do video calls from one to the other using Drop In, she tried it out.   She wasn’t sure where to be in front of it though so we got a very nice close up of her nose and cheek for the call. 

Home Nearly Alone

I don’t have any children.   I’m sitting downstairs, in the basement, with our friends who’ve come over for movie night and I don’t have children asking me to do anything for them, bring anything to them or help them.   I don’t have things to clean up before their bedtime and I’m not looking at my watch to see how much longer until I have to get them moving in the direction of bed.  

This is nice.  I’m sort of confused though with the whole lack of chaos.

The Big Boy Update:  My son got in trouble at camp today.   We got a call that he had bumped a friend by accident.   The friend got upset and didn’t believe my son did it by accident.   My son got frustrated thought and pulled his fist back like he was going to hit

The Tiny Girl Chronicles:  My daughter wanted to know if she could take her purple yoga ball with her today to go and stay with Nana and Papa.   She almost had it in the car when she decided she was unsure if she would lose it down the stairs (and possibly her rolling down the stairs with it) so she rolled it back into the house before she left.

Contracted Braille

I found out today I passed my first braille class.   Did I mention I was taking a class?   My daughter’s braillest from last year told me about an online class that teaches braille to sighted people.  It was a well-organized and, in my opinion, fun class.   Fun possibly in that I was learning the “secret code” my daughter has been learning for over two years.   She could be my teacher and we were both enjoying doing things in braille together.

There are two classes though, and I’m fairly certain I’ve passed the easier of the two.   The next class is UEB Contracted Braille.   UEB (Unified English Braille) is the standard for braille.   Uncontracted braille is where every single word is written out letter by letter.    As sighted people, we read fairly quickly in part because our eyes can see the word pattern and read the word as a whole.   We don’t read out every letter at a time and then put them together as a word.  

When you read braille as a visually impaired or blind person, and I mean read braille as in use your fingers to feel the dot patterns, you can only feel one letter at a time.   You can feel them very, very quickly, but you still have to pass everything under the pads of your fingertips.

Contracted braille is sort of like shorthand.  It’s taking common things like the suffixes, ‘ed’ or ‘ing’ and having a shorter symbol represent them.   It makes reading much faster.

I’m a little nervous though.   I hope my daughter will still be willing to teach me.   She’s made me laugh recently when I’ve asked her something, knowing I should know what the braille symbol is, but I can’t remember.   She’ll say, “I already told you that!”   She, never forgets anything.

The Big Boy Update:  Every year at my son’s school there is a photo album with a page for each child.   There is a narrativ'e from the child, introducing themselves, their family, things they like, etc.   This year is the first year my son can read and write well enough to write his own narrative.   He’s going to work on it over the next few days for his homework.   I’m interested in what he’s going to say.

The Tiny Girl Chronicles:  Dhruti texted me after my daughter’s therapy session yesterday.   She said: “She asked me today to narrate some stories of when I wasn’t feeling good and have to go to an office at the school. She asked me when I was younger did I have to ever go to an office when something bad happened. She listened to some of my stories and was almost about to talk about her stories and then stopped her self. I didn’t push.”   Then today, Chelsea told me after music therapy that something similar had happened.    This is a good thing.   It sounds like my daughter may be getting ready to start talking about difficult things.    She’s patently refused to talk about or even acknowledge that you’re talking to her about them up to now.   She won’t be able to process and ultimately accept her blindness until she can work through it.  

Stonework

We had homework issues with my son this morning.  He did that thing he does sometimes when he can’t seem to get engaged mentally to begin this homework and/or stay on task.   Something happens in his brain and he just can’t work.   At all.  

For example, this morning he created a treasure map for me and told me I had to find the homework, using the map, because he’d hid it.  Then he was hungry (for a second breakfast, which he ate), then he wanted to change assignments.   Next he wanted to talk to his father about, well, lots of things—anything other than actually doing the assignment.   Thirty minutes into his homework and the only thing he’d done was write his name and the date.

The thing is, he can do the work easily.   In this case, it was copying words with similar vowel sounds.   It was not particularly challenging at all.   Thirty odd words on a single page of paper, with good penmanship in mind (which is a bit of a challenge for him).   And yet he couldn’t get started.    We’ve seen this happen many times now, and yet it’s still confusing as to why.   When my son eventually gets around to doing the work, he usually starts whatever the assignment is and gets done quickly.    In a lot of cases however, he’s whinging on about it  for sometimes three or four times as long as it would have taken him to complete the assignment in the first place.

This morning’s homework session didn’t end very positively, with him not completing the work and me losing my patience with him.   My husband wasn’t altogether happy with him either.   And yet I knew he wasn’t doing this just to get us frustrated, because he hates it.   So on the ride to Parkour Fortnite camp I asked him if he could explain what happened inside his head that made it so hard to do work sometimes?

And he could.   He said, “I call it Stonework, not homework, because there’s a wall and when it breaks through the wall I can’t get anything done.”

What he explained, using the wall metaphor, was that there were warriors and fighters and guns and things outside the stonework.   If they break through, he’s lost.   He can’t get the work done because he’s being bombarded.    But if the stonewall isn’t breached, he can calmly focus on the work.

I asked him if there was something that would help keep the stone wall in place?  He said Alexa telling a bedtime story helped he thought.   We talked about calm music and some other options.   We agreed to work on it together in the future when it happened again.

He knew I was writing this down—his metaphor—to write in the blog for tonight.   He asked me, “can you send it to Liz?”   Liz is his integrative therapist, who has helped him in many ways.   I told him I’d definitely be sure to let Liz know about it.

The Big Boy Update:  My son told his sister and me today, “I love orchestra music.   It’s my favorite kind of music.”   He likes lots of different kinds of music, including some pretty upbeat EDM (Electronic Dance Music), but his favorite channel is the Movie Music channel which has lots of orchestra-based pieces—even if some of those pieces are from Marvel Universe movies.

The Tiny Girl Chronicles:  My daughter uses Alexa for a lot of things.   She called her dad the other day, trying to find him:

He was in the house.   She found him right after leaving the message.

Peacf

I was talking to my husband about what to write for my post tonight.   He had just destroyed me in Type Racer.   He unfairly won, because of some Mac formatting incompatibility with the game, but seeing as that wasn’t his fault, I don’t plan on holding it against him.   Also, he types faster than I do, so I was doomed from the start.

I had two topics, ‘Peacf’ and 'Pineapple Sludge'.   He said the Peacf topic was about our daughter, and I’ve written about her a lot, so perhaps the Pineapple Sludge story…only that one was gross, so it was up to me.   And I suppose since I’ve mentioned them both, and leaving a topic with a name like ‘Pineapple Sludge’ dangling doesn’t seem polite, I’ll do a rundown of both.

It started with a smell.   It came and went and was hard to track down.   But it was musty and in the general area of the laundry room but it meandered into the hall outside it and sometimes towards the garage door.   Edna and I had smelled it but we couldn’t trace it down, because once you walked into the area where the smell was, your body moved the air around enough that it dissipated.

Everything was sniffed.   The sink in the laundry room had things dumped down it for odor, even though it didn’t seem like it was coming from there.    We looked over, under and around everything and nothing smelled bad.   But it would come back.

Then tonight it hit me it might be the ice machine.   The machine would really like to be cleaned every three months, only I put it off for far longer.   Eventually it gets a little funky—with a smell not unlike what we were smelling only the door was shut.   But it still dumped water overage down a drain that was in the back of the cabinet in the center of the area where the smell kept appearing.   So tonight after the children went to bed I started in on the pieces removal, hand cleaning and chemical additive put into the unit after initiating the clean cycle.  

That should fix it, I thought.   As I was putting up the box of cleaner pouches in the cabinet beside the ice machine I saw the five year filter in the back and wondered if it had been five years since we put it in.   It had, not surprisingly, been longer.    I was moving things out of the way to get a picture of the filter so I could order it online when I saw this black sludge on the lower shelf.

The contents of that cabinet, including the filter, were probably all put in over five years ago.   I had some mini cans of pineapple juice I’d forgotten about—which had subsequently imploded or exploded into a viscous black sludge.   No smell, just sticky and black.  It didn’t smell and wasn’t even hard to clean up, leaving no residual mark on the cabinet itself.   I have an entire cabinet empty now because everything was out of date or unused so I threw it all away.

That was meant to be the short part of the blog post but it got away from me.   For my daughter, we’ve been trying to give her some control in her life since she can see very little at all.   This is one small example of how I rearranged the refrigerator today so she could be more independent.

I cleared a spot in the door for her water bottle and put her name in braille on it, her brother’s name on his same-shaped water bottle and put tape on her handle so she could find it quickly and easily.   She’s also been wanting to eat a lot of yogurt lately.   I got a selection of five different kinds at the store today and asked her when she got home if she’d like to have each kind in its own row?   This would necessarily take up more space in the refrigerator, but would help her not only be able to find the yogurt, but the flavor she wanted.

Prior to this she was bringing them to us to ask which kind she had, or she would just eat whatever she got and have no control over what flavor she got.   Today, we made braille labels for each row and put them at the edge of the shelf so she could read the types of yogurt just behind the labels.

My husband and I were excited to show her, asking her if she could tell what it was.   She said, “p-e-a-c-f?  Oh, mom, did you mean to write peach?  You did an ‘f’ instead of an ‘h’”.  And so I had.   But she was excited nonetheless.

The Big Boy Tiny Girl Beyblades Update:  My son became obsessed with Beyblades (a spinning top battle game) when he was at camp last week.   He spent some stamps and ordered the plastic battle arena and some Beyblades to battle.   His sister told him there was a Beyblades show, which he didn’t know about.   And it turns out, the two of them are pretty good at battling together and they’re both all into the show now.

Not Vomiting

My daughter is having—we think—some severe anxiety.   She’s been complaining of a stomach ache for a few weeks now, which coincidentally coincides with the start of school as well as around about the point she started the latest round of antibiotics for a bladder infection.   The etiology of the stomach ache is a mystery.

The UTI’s she’s had (four since May) have been ecoli for three of them and then klebsiella for the last one, with the most recent one also having the kicker of being and antibiotic resistant strain.   After discussion with a pediatric infectious disease doctor, the decision was to go with an antibiotic that was stronger and more commonly given to adults.    And it worked.   Today she has nothing at all in her urine.

And while that’s a win, we still have the stomach ache thing going on.    The problem from a medical standpoint is where the pain is emanating from—an inch to the left of her navel.   And that, from an anatomy standpoint, isn’t anywhere, unless it’s serotonin-related stress tightening of the muscles in her abdomen, which is what Dhruti thinks is the most likely cause.

The pain seems to be worse when something stressful (school in particular) is about to happen, is happening or she’s thinking about happening.   It might be going out to dinner as well, or anything she’s unsure about with the diminished vision.   But mostly, it’s school.

Today it took me twenty minutes to get her into the building and off with her braillest when we arrived after her doctor’s appointment.   And this has never, ever happened before.   Ever.   She says standing up, sitting down, bending and doing all sorts of things in school hurt her.   But, she told me, iPad and chocolate don’t bother her stomach…hmm…

I left her at school and went to pick up a prescription for her for a possible follow-on yeast infection from all the antibiotics when I got an email from her VI teacher, saying she was having a hard time at school and they wanted to know what to do because they knew it was likely anxiety.   They didn’t want to take her to the office to call us only to have us say we didn’t want to come pick her up, realizing that might be more anxiety overall.    I hadn’t had a chance to meet her VI teacher yet, but we had been exchanging emails on several things and I have been very appreciative of the support she, my daughter’s braillest and main teacher have been giving her, understanding she’s having a hard time.

I called Dhruti and she said to definitely not pick her up from school.   She had advice though: give her anything sensorial to do like kinetic sand, theraputty, something she could touch and manipulate with her hands.   Also, if she had something from home like a stuffed animal she could hold, that would help.   We’d talked about this last week and when I described to Dhruti what was going on she said the location and description from my daughter of the pain is what happens to children when the serotonin from anxiety causes abdominal, visceral pain.

I emailed school that I was on the way in with a stuffed animal (Pink Panther) and a small blanket.   If she was having a hard time, have her hold the stuffed animal and put the blanket over her.   My daughter does this all the time—curling up in a ball and pulling a blanket over her.    When I got to school I met her new VI teacher who said she hated it that my daughter was disliking school so much.   I felt badly, her with a new student who from all appearances, didn’t want to be there with her.  I said I was pretty sure it wasn’t school, it was the drop in vision—that she loved school last year.

Her VI teacher and her Braillest met me at the front of the school and said the sad thing was my daughter just wouldn’t engage in school.   She just was refusing to do anything.   Or at least some of the time she was.  I asked if they could meet with Dhruti tomorrow at 11:45 to discuss?   Dhruti would have helpful advice I thought, being an expert in children suffering through trauma and knowing my daughter since her initial loss of vision.

This afternoon when my daughter got home I was expecting to hear about school being awful, but she said, “I had a good time this morning.”  We got there shortly before lunch, so I wasn’t sure when, but apparently some of the reading work she had done was fun.   I asked her though if her stomach had been bothering her.   She said it did, but she had tried not to vomit.

We met with her teacher tonight at a meet the parents meeting of all the parents in the class.   We all agreed we need to have a meeting together to see if we can get a plan to best help ease any anxiety my daughter's having.   That’s the next plan.   My daughter doesn’t seem to get a break.

The Big Boy Update:  My son was very cross about having to do homework this evening.   I told him before bed tonight that I put out tomorrow’s homework (that he’d already picked out) so he could do it before camp.  That way he could relax when he got home with some screen time.   He told me that this morning he hadn’t had time to do his homework to which I reminded him he had gotten up and turned on the Nintendo Switch in the bonus room before we realized he was awake, using up a lot of his morning homework time.   I asked him if I needed to take the switch downstairs tonight so he wouldn’t be tempted tomorrow?   He said, “no, I can handle it.”

The Tiny Girl Chronicles:  We were having loud time the other day.   We were all making noise.   My daughter disappeared and came back a few minutes later to tell me, “I left in the middle of unquiet time to go to the bathroom.   I don’t like the word potty anymore.”

Hide and Sneak

My husband was working this morning and I was trying to persuade the children to go to the pool with me.   A lot of times getting them to do something different than what they’re doing right at that moment is a bit of a challenge.   Even if they’re currently bored.   My daughter wasn’t interested in going to the pool all the way at the country club…except…”hey, mom, can we go to the buffet?”

My daughter is in a growth spurt.   At least I think she is from the amount of food she’s eating and the speed she’s growing out of clothes.   But what buffet?  I was confused and then I realized she meant the Sunday brunch buffet at the club.   This is a buffet we haven’t been to since well before they remodeled the grill area at the club.   But she remembered.   And we went.

Our favorite waffle maker, Martine, was still making waffles two years later and my children liked the added foods on the buffet.    As I was finishing up, my son asked if they could go play in the wedding chapel area (more of an outdoor area frequently set up for weddings but they call it the chapel).   Our waitress had just come up and asked if there was anything else we needed?

I asked the children if they had any questions for Ajia before they ran off?  There was about three seconds of silence and then my daughter said, “what’s two plus two?”   Seeing as Ajia got that question right, my daughter and son started firing more and more complex math questions at her until she relented and we sent them off to, “the chapel” to play.

I met up with them a few minutes later to see a game underway.   My son saw me come up, but I remained quiet and my daughter had no idea I was there.   She was walking towards him fairly accurately across the grassy section when I saw him sneak away.   Thinking this was a rather unfair version of hide and seek I started moving in towards my daughter.  

She saw motion and came towards me and when she got close I said, “hi, it’s mom, what are you playing?”   She told me she was trying to find her brother from the sounds he made.   So I stepped back and watched.    He would move stealthily on the bricked walk, but then walk through the pine straw so she could hear him.    When he did this she said to me, “he’s behind the bushes over there.”

I don’t think my daughter could actually win the game unless her brother had wanted to, but they were both having fun.   She was using sound to find him and he was being stealthy.   I suppose fun is all that matters when you’re playing a game, really.

The Big Boy Update:  My son is really kind to his sister on a lot of occasions.   In some cases he’s not  though.   He pushed her this morning when she ran into him, trying to find the clothes I’d told her were on the bed.  Not hard, but it was the kind of thing she gets upset and yells about.   He I don’t think realized she didn’t even know he was there.    They’re both learning how to interact together as they get older.   They play together well a lot of the time.   That is until they both want to sit in the same seat at the same time.   Then all hell breaks loose.

The Tiny Girl Chronicles:  My daughter said as we were riding home from dinner last night, “Mom, do you know how all four of us are sitting in the car?  Well, we make a braille X”. And we did.   A braille X is four dots in the four corners.

Pet the Cat

What can I do to keep my daughter entertained?  I’m half losing my mind.   She’s “so sweet” to everyone who interacts with her, only that’s not what she’s always like when no one is around.   She’s grouchy, demanding, angry, defiant and yes, she’s also very sweet.   But she’s having a lot of anxiety with the latest round of vision loss.

I sent an email to discuss the lack of vision returning to her pediatric ophthalmologist. (Three years in and I’ve almost figured out how to spell ‘ophthalmologist’ without autocorrect jumping in to add a missing ‘h’ or ‘o’.)  Was her edema a result of the cessation of the steroid drops or something else entirely?   Why is the pressure high when it was always low before?   We don’t have answers, but she did say the edema might take months to resolve—and we’re just approaching the end of month one on the Very Expensive Grey drops.  That made me feel a little better because the last I had heard was “a bit longer than two weeks given that it may be a moderate amount of edema”.

What she and Dr. Trese did decide on was to add back in the steroid drops that quite possibly caused the edema in the first place when we titrated off them a few months ago, which are the best option to help the edema.

She now has the following drops each day:
- Pink drops six times left eye
- Grey drops six times left eye
- Purple drops three times left eye
- Blue drops two times both eyes
- Red drops once both eyes

And that’s only one of the things going on in my daughter’s life.  There is also the eczema, repeated bladder infections and possible yeast infection as a result of all the antibiotics from the bladder infections.   Plus all new teachers and driver.

So her stomach hurts all the time.   All the time that is when she’s worried about something—which is a lot of the time.   And she’s bored a lot of the time.   Today she had a birthday party but didn’t want to go to the store to get a birthday present because he stomach hurt.   Then she didn’t want to go to the party (which she loved) because her stomach hurt.

I didn’t know what to do but I had an idea.   My daughter loves cats.   She doesn’t have much experience with cats, but what she does have, she liked.   I needed to go some place where she could pet a cat and the cat would stay still for her.   I didn’t know, but you can go to the SPCA and just walk into the adoption rooms and see the cats and kittens.   The last time I was in a shelter was with my cousin when she got her dog, Shasta, which was over twenty years ago.

After the birthday party I went with my daughter and we went to the rooms.   The people in there were nice, but most of them didn’t understand.   One gave her a toy on a string with a stick and my daughter tried to find the cat but was moving the stick towards her teenage daughter because it was a large enough object that she could tell there was movement.

We tried a room with some older cats but with the limited experience my daughter has in actually touching cats, she didn’t get the best response.   I had to show he how to calmly pet (and not pat) a cat.   It’s hard to know where to pet a cat on their body if you can’t see where the parts of their body is.    So we left that room and waited to have a chance in the kitten room.

And that worked.   A very kind staff member brought out a few kittens, working with a blanket and me and we found one calm enough to just sit in my daughter’s lap and purr while she petted him.    We let her touch the parts of his body and I showed her the kinds of things cats liked done to them,

Then we left, my daughter telling the person who had helped us, “we’ll be back tomorrow”.  I’m trying to figure out things we can do to give her experiences while her vision is so low.   Maybe it will always be this low: it wasn’t much better before the latest loss, but at least it was more.    I think today was a nice experience for my daughter, even if we can’t adopt a cat because her brother is allergic.

The Big Boy Update:  My son is playing a very realistic looking game on the Xbox in the basement.   It’s the most complex game he’s probably played, with a lot of reading necessary, but it’s beautiful and he watched my husband playing it. 

The Tiny Girl Chronicles:  My daughter can see very little, but there is something she can see more when she’s at a very, very close distance.   Having the VR headset on and playing Minecraft 3D she can almost do a bit.   She asked dad to set it up for her and as he left to go downstairs she said to him, “I’ll be down there in a jiffy."

New Passport Friends

My husband and I met after school and camp with the children at the passport office of the post office on Wednesday.   We had been meaning to get this task done for months, but it continued to get postponed, so I was glad we were finally making it happen.

When we arrived there was almost no one in the waiting area aside from one man, his wife and eight-month baby.   My son bounced around, looking for zombies down the long hallway through the closed glass door.    The father of the other family went up to get the paperwork done as my daughter and husband arrived.  

About that time they needed to get a photograph of the baby.   But there could be no parent in the picture.    This involved the father having her on his shoulders and the mother trying to get the baby to look in her direction, just over the camera.

My daughter heard all of this, including our claps at the end, saying what a team effort that had been. And my daughter wanted to know all about the baby.   The mother and father, realizing she couldn’t see because of how we’d been answering her questions, brought their daughter over to her and told her to touch her.   They talked all about the baby and let my daughter feel her feet, her hair and let the baby grab her hair in return.  

The mother picked my daughter up and put her on her lap, and then put the baby on my daughter’s lap.    I don’t think I’ve seen my daughter so engaged and happy in a long time.   She said the baby liked her she thought because she was playing with her hair and touching her face.  

We had to go up to sign our papers and get our pictures taken, but my daughter had only eyes for the baby and the mother and father who weren’t afraid to let some unknown child touch theirs so she could experience her.  

Everyone working there was smiling because it was just so sweet.   Another man arrived after we did and he kept grinning because it was such a fun exchange.    I think he thought we were all together, we’d become such good friends so quickly.  

My daughter didn’t want to leave, didn’t want them to go, was trying to coordinate play dates and asking them if they went to certain places and maybe we could meet there so she could play with their baby.   I gave them my card and thanked them.   It was more special to my daughter than I think they realized.   They were special to me too.

The Big Boy Update:  My son can not keep a bottle of sun screen with him at camp.   He’s lost two bottles in two days.   I had to run to the store this morning before came to get him some more last minute when we realized we were out.

The Tiny Girl Chronicles:  I can’t remember the last time my daughter climbed the door frames in the house.   She has no interest.   What she does want to do is bring the purple ball with her no matter where she is.    This is a large yoga ball.   She carries it up and down stairs, wants to brush her hair on it and even her teeth.   We’ve had to draw the line at eating though.

De-arming the Door

We have a side garage door.  When we built our house we had the standard car-facing big doors and then a human-sized door on the side of the garage.   The alarm company people looped it in with the other windows and doors in the house and all was “protected”.   Or so it would seem.

The garage doors we put on a keypad, so anyone who needed to get into the garage area of the house we’d give the code to.   Someone wanting to borrow the power washer, friends dropping off something while we weren’t at home or our next-door-neighbor needing a place to temporarily store the latest pinball machine he’d bought.   Those among other reasons would be cause for sharing the code to the garage…only there was a catch:

Only open the garage doors.  Don’t open the side door, even though it’s right there and the garage doors are open and it doesn’t look like it could do any harm—because it will set off the house alarm.  

Simple enough, and yet it would happen.   Mostly it would happen to us, when we came home.   I set it off yesterday without thinking.   I drove into the garage and had noticed Whitaker ringing the doorbell to see if my children could come out to play.  I exited my car door and opened the side garage door to walk to the front door—because it was right there.  

I told Whitaker the children would be home in an hour and then I heard klaxon’s going off from inside the house.   We get caught off guard by this because opening the side garage door is silent and doesn’t let you know you’ve triggered the alarm unless you’re inside the house and hear it doing that counting down beeping.   And then you look stupid when you set off your own alarm.

So why did we have the door armed?   We weren’t sure.   But we kept doing the arming thing for almost eight years now.   And get this: we even added a third car garage, moving the door to an entirely different spot in the garage, moving the wiring and still having it as part of the circuit.  

I would guess of all the times the alarm has been tripped at our house, none of which were actual burglary situations, ninety percent were accidents because of that door.   And I’d had enough.  

I called the alarm company and today a technician came out and changed the panel so that the door isn’t included in the circuit anymore.   Ten minutes.   Ten minutes was all it took to change the system.   Why is it we’re blinded to some things because that’s how they’ve always been?

The Big Boy Update:  Some people see shapes in clouds.   My son and I were on the porch in a rain storm the other night.   The wind was whipping the trees around.   My son told me, “the branches look like waves of water.   Sometimes if I look in the trees I see a horse’s head.”

The Tiny Girl Chronicles:   I’ll have to go into the latest advice we got from my daughter’s play therapist in a day or two; I’m still processing it.   My daughter made up a song today called, “Laser Eyes” with her music therapist.   She asked if we could all come upstairs so her father, brother and I came to listen to the song.   She’s starting to process being blind and just beginning to speak about it.

So This Is Hard

Some days are good days as a parent and some are bad days.   Some days might not seem like bad days until something happens that really lets you know how bad they are.   Something crystalizes it and you just sort of mentally slump in your mind chair and think, “I need to do better tomorrow, and the next day, and the one after that…because there is a small being who needs you.”

I was going through the work my daughter had brought home from school today.   This was after having the first ever tantrum on the floor, I don’t want to go to school, my stomach hurts, incident from my daughter.    We thought it might be her antibiotic, but we’re fairly certain it’s anxiety.    I sent her off in the taxi with her very understanding and kind driver with the promise to send her teachers an email about her not feeling well.

I got a response back from her teacher saying they would do their best to help her out when she got to school.    In the afternoon my husband got a call from her as well and they talked about all that was going on.   My daughter has a new teacher, yes, but so does every other student in her class.   She’s got the added change of a new braillest, a new VI teacher and a new taxi driver.   And none of her friends are in the taxi with her.    Her day is completely different, which is one thing, but she’s losing vision on top of it and she’s not coping well.  At all.

Her play therapist said to me two weeks ago that she needs to co-regulate, that she can’t self-regulate right now and will need extra time spent with her and that there’s not much we can do to help aside from ride this out with her.    So when I read this that she’d written up at school in the first week, well, it made me want to cry.



I was on the way to my son’s integrative therapist with him and when he was done I showed this note to Liz and asked for a quick bit of advice, saying we’d be meeting with Dhruti for more in the way of guidance tomorrow.

Liz, who’s also seen my daughter, albeit only a few times, said she noticed my daughter was in fight or flight mode almost 100% of the time, with the only mental break she got from it when she curled up in a ball on the floor (which she does regularly and I didn’t know that’s what it meant).   She said, “what is ‘play’ to a child?  It’s everything.  She just wants you to do anything with her.   You can help her put her things away or have her help you in what you’re doing.   Just being together will help.”

We’re not failing as parents, but we have a lot of challenges to help my daughter.   Some days feel like C- parenting days.   Fortunately we have a long time to go before the final grade is in.

The Big Boy Update:  My son played some tennis at camp today.   He sort of likes tennis, although getting the ball to go to the spot it’s suppose to go is a bit of a challenge.   In his mind he made up an entirely new version of tennis in which you tried to hit the ball over, under or into the net.   There were points awarded based on difficulty of the shot.   This was, “Penalty Ball” he told me he’d named the game.

The Tiny Girl Chronicles:  My daughter told Beth this weekend, “I’m gonna tell you my secret power…I hear everything.”

All About Her

My daughter is having a hard time lately.   She’s blind, but she’s going more blind.  She’s losing the very little vision she has left we’re worried.   She’s lost it, but can it come back?  That part we don’t know about.   We’re doing enough drops to drown her little eyes with different purposes to help keep her eyes as stable as possible.    But can they heal at all from the recent edema?   What is gone for good and what may return?

To say we’re understanding of what she’s going through isn’t a straightforward thing.   As parents, we hate this for her.   It’s heartbreaking for any parent to think of their child going through a medical trauma that goes on and on and has permanent, lasting damage on a child’s life.   But that doesn’t mean we have to parent her as though she’s broken.   That wouldn’t help her, it would handicap.  

I didn’t think much of how we were treating our daughter until I got to know her braillest last year.   As an educator, she has worked with many children in her career.   She made me feel good about how we were treating our daughter—as a capable person.   Sure, we help her when she needed it.   But we try to teach her to be independent and help her to learn, not just do things for her.

But things change when my daughter’s vision—the vision level she knows and has adapted to—suddenly changes for the worse.   She gets lost.   She’s scared.   And she needs more help.   My daughter isn’t a frail little waif wanting to be helped though.   She’s feisty.   And she isn’t an easy one to help.  

Lately, it seems the more vision she loses, the more everything is about her.   She’s not easy to deal with a lot of the time.    My husband and I don’t understand it.   But we have expert help and are going to get some guidance from her therapist.   Thank goodness for Dhruti.   I’ll have to let you know what she says, because things keep getting more and more interesting with my daughter.

The Big Boy Update:  I just found a bookmark my son made over the winter break.   It made me sad reading what he wrote on it but happy in a way too because he’s made so much progress interacting with other children socially.   He wrote, “My New Year’s resolution for 2018 is to ask friends to let me play with them.”

The Tiny Girl Chronicles:  My daughter had a very long ride to and from school last year.   This year so far she is the only student in her van.   Both to and from school.   She can get there and back faster in the van than she could with us because the van (or “taxi”) doesn’t have to wait in the carpool line.   I suspect there will be more students added to her route soon enough.   For now, she’s enjoying riding with Ms. Williams though.

The Dress

I went to an overstock clothing event when I was in New Jersey visiting with our family.   I had been told by my niece and nephew’s girlfriend that it was overwhelming, there was so much to go through in the large convention center space.    And they were right.   We had a short amount of time and a lot to go through.    I found a few things and met up with them where we changed in the corner, sort of behind some clothing racks where only a few men could watch us without looking like complete pervs.

Of the three things I got, one of them was out of my comfort zone though.   There was this pink dress that was more like something I’d wear if I played tennis (which I don’t) only the skirt was a bit too flowy for tennis.   My cohorts (who were on average thirty years my junior) said I looked good in the dress so I got it.

I didn’t even know what to wear with it but this morning I threw caution to the wind, put it on with some tennis shoes since I was running late to get my daughter to the chiropractor.   I was running late because my daughter had set her alarm, gotten breakfast for herself, had put clothes on, came to my side of the bed and told me she needed to go to the chiropractor.   I had to hustle to get her there and back before her taxi arrived.

That started the strangest day of dress compliments I’ve ever had in my life.   I was in a dress that I think looked reasonably nice on me, but I didn’t feel altogether like I should be wearing it, what with being well out of my twenties.   Everyone said something about it.   People who I wouldn't expect to even be paying attention to what I was wearing said something or other about how it was an interesting style or that it suited me.

One lady towards the end of the day while I was waiting in line at the pharmacy asked me if it was a bathing suit.   I felt the material and realized it was possible it could be, it was one of the materials bathing suits are made of these days.    I mentioned there would need to be bottoms if that were the case, what with it being a skirt and all.   She and I laughed and came up with tactical ideas on the bathing suit/dress theory.

I told her I didn’t trust myself on land, much less in water with a skirt and showed her the shorts I had on, hidden under the folds of the dress.

The Big Boy Update:  My son was playing with the ball Beth gave him that lit up when it was bounced.   He said to my mother and Beth: “I’m going to make this light up by telekinesis…and shaking”.

The Tiny Girl Chronicles:  Yesterday on the ride home from the mountains my daughter said her back was hurting.   She said she wanted to go to the chiropractor in the morning.   She told me she was going to set her alarm for five.   I said, “you have an alarm?”  She replied, “Alexa can do that, you know.”   I explained that the chiropractor’s office didn’t open until six.   This morning I found out later that she did set an alarm, but didn’t get up right away because she had Alexa read her some stories.

My Apologies To My Grown Son…

…but I have to write this one up because it was too sweet.  We were getting packed up in preparation to leave to go home today, having had a lovely weekend with my parents and some of their friends in the mountains,   My children were excited because Beth, their newest best friend in the whole world (and close friend to my parents), had come back down to spend a little more time with them before we departed.

Beth had joined us for dinner on Saturday night and had brought presents for the children.   There were two feather boas for my daughter, who asked what colors they were and then asked her brother straight away which one he wanted.    Beth said it was for when you wanted to feel glamorous.   I think my son, not entirely sure what the word ‘glamorous’ meant, still wanted to be it because Beth made glamorous sound pretty exciting.   (For those of you who don’t know Beth, she makes everything sound exciting.)

The other presents were balls that had light-up components in them when you bounced them.    The children wanted to bounce them non-stop, but we had to take them away for adult sanity purposes when we got seated at our table at Outback.  

Beth is a very happy, positive person and I’m not really sure how she disengages herself from children, because she speaks child better than actual children do.   My children had invited her to move in with us by the end of the night I think.   I didn’t disagree, we were all having fun with Beth.

But this isn’t getting to the main point of this post, which involves my son and Beth when she came back today to see the children again before we left.    I was packing up when I heard a game of hide and seek beginning on the floor below.    It would appear my children were the hiders with Beth being the seeker.   I knew this because I listened to Beth count in language after language after language.   Some of them you’d predict such as English, Spanish or Japanese.   What you wouldn’t guess were things like Tibetian Himalayan or Donkey.

She finally reached the agreed upon counting number and then went hunting for the children.   The floor they were on was at the bottom of the house—a mountain house—which means it was both the entry level and the smallest level.    But Beth was looking and looking.   And eventually she found the children.

A few minutes later and everyone was upstairs except for my son, who called up to me to come downstairs for a minute.   I called back, “I’m packing up, can you come to me?”   He said he couldn’t, that it was sort of something he needed me to come there to help with.   He didn’t sound upset or worried.   Just that he needed me.

I came down to find him in the room they’d been staying in, now completely empty of their belongings as I’d already packed them up.   He was holding his pants in his hand, having nothing on but his shirt and some socks.   He said he had been really committed to his hiding place and he’d wet in his pants  during the whole process of remaining hidden.

We’ve never shamed the children for wetting their pants and I can’t remember the last time my son did so.   I told him I’d be back with some clothes from the car, to wait there.   He handed me the pants and I got a second surprise—they weren’t wet, they were drenched.  I had to give him points for dedication, he wasn’t giving up his hiding place, even if that meant his pants would suffer.

I came upstairs and sent my husband for the pants while I got a bag for the wet ones.   And I called Beth to the corner and whispered to her what had happened.    She, my mother and I were all giggling because it was just too sweet.   I told Beth he didn’t get that into hide and seek with just anyone, that she was special.   Beth said she’d been saying how her nose had been tickling and she just could’t keep from sneezing and she was doing all sorts of trickery to try and get my son to reveal his hiding location.    Committed my son was to winning the game.

So son, when you read this in fifteen years and realize I told everyone about you wetting your pants at seven during an intense game of hide and seek, I hope you can forgive me.

The Big Boy Update:  My son wrote Beth a thank you note today with a picture of him (I think?) wearing the feather boa she gave him.   He said he hoped she would come to see us.  (Hear that, Beth?  The invitation is open from the whole family.)

The Tiny Girl Chronicles:  My daughter wrote Beth a thank you note on her brailler and then She stuck crystals on it with double-stick tape.   I translated the braille to text on her note so Beth could read it.   Beth has said she’s going to hang it on her mantle.   I’m not sure there could be higher praise.  

The World Depends On It

We went to a suspended ropes obstacle course this morning.   My daughter wasn’t happy about going because it was raining.   I suspect it was because she couldn’t see it and didn’t know what it was.   She might have had a lot of fun.    We decided to send her home with my mother and send my husband off to play golf with my father, which left my son and me to do the High Gravity course alone. 

We picked the more challenging, three-leveled course that my son barely qualified for in both height and age.   It turned out he was not only unafraid, but un-tireable.   I couldn’t wear him out.   It was a little more taxing on me because he wasn’t tall enough to change his cables over so every section we did I hooked us both in and out of.   Some of the ones he chose were extra hard and I had to scale to the middle and try and push his cables along so he could make it to the other side. 

There was a staff member on the third level who told us there weren’t many children his size that came up that high.    Getting my son up wasn’t the problem, it was getting him down.   And I was tired.  

We met a man at one of the platforms who had noticed my son doing one of the little mini dances he does.    He recognized it and said to my son, “do the Orange Julias”.  My son immediately launched into the FortNite dance and said back to him, “it’s the Orange Justice”.   The man and I laughed together.   

Before I got my son to agree to end for the day, he wanted to do one of the most difficult segments.   I asked him if he was sure.   He told me, “the world depends on it.”   With this new information we attacked the remainder of the course with renewed vigor.  

I’m not sure if we saved the world, but we had a really nice time together this afternoon. 

The Big Boy Tiny Girl Alexa Adventures:   My son and daughter were playing the “Alexa” game, for lack of a better name, in the car yesterday.   One would say, “you be Alexa, okay, now, Alexa play the theme from Transformers Prime”.  Then the other one would start to hum the song.    After a bit I’d hear them say, “okay, you be Alexa now”.    After the switch a question would be asked and I’d hear, “sorry, I don’t know that” just like Alexa would say.   

The Welcome Mat

We drove to the mountains yesterday to visit with my parents.   We picked my daughter up from school and started to drive what turned out to be an almost entire drive in the rain.   We had various levels and types of rain from mist to drizzle to hard rain to almost monsoon.   Both the car an my husband did a good job of getting us here safely.  

As we were about five minutes from their house we got a phone call from my parents, inquiring on what time we thought we’d arrive.   When we told them we were only minutes out, my mother said, “I’ll put out the welcome mat.”

After we hung up my son said, “they have a welcome mat?”  We explained it was a saying meaning they would be ready to welcome us when we arrived.   But that it also could mean a mat at the front door.  

My husband and I forgot all about it as we pulled in and started unpacking the car.   I walked to the front door with my son.   I held it open so he could walk in with his backpack.   As he crossed the threshold, he looked down to see a decorative rug just inside.   He looked at it quizzically and said to me, “this is a welcome mat?”

The Big Boy Update:  My son was so mature today.   I’ve been very impressed with him.    I talked to him a bit about it today and he told me he said he felt like he was ten-years-old.

The Tiny Girl Chronicles:  My daughter said today was “serious full day”.  That meant, she explained, that you could eat as much as you want without getting full, full, full.    For her, this was nearly true—she seemed to eat all day long.   Every time we thought we’d gotten her full, she’d come back and ask for another slice of bread.  

Girlfriend is Puma?

After the unexpected text from my boyfriend from 1993 the other week, he and I have been sending messages to each other, reminiscing about this thing or that.    I sent him a picture of a vase with a lizard on it, asking if he remembered getting it for me; that it had always been on a shelf in my living room, going with me as I moved from house to house.    He replied he definitely did, and he had one similar to it on his shelf in his house from all those years ago.

We talked about the Mikasa dishes we’d gotten from the seconds stock in the back of the outlet store. He remembered piling through all the stacks of dishes, finding with me all the best of the “seconds”.   I had sent him a picture. saying to this day I refuse to use any other daily wear dishes, ordering replacements from Replacements, Ltd. anytime one breaks. 

He had found some old school style pictures printed on actual photo paper.    He took a new school style picture of the pictures with his phone and send them to me.   And wow, did we look young.  There was one picture I couldn’t place.   We were in seats in a vehicle but I didn’t know more than that.   I messaged back was that when we were in Germany on the train?    He said no, that that was in a green Lincoln Towncar.   I looked at the picture again and there was no indication it was anything other than the possible back seat of a car, much less a Lincoln Towncar of the green variety.

So I asked how he knew and he said he remembered renting it.   It was for one of the weddings we went to with his good friends, one of whom was very tall.   He’d rented the largest car he could for leg room for Greg.   Then I remembered.   The entire weekend of jokes and comments about the car.   Then he said speaking of the train in Germany, he had a story he’d told for years about when we were traveling from Germany to Austria and had gotten stopped by border patrol.

He typed, “girlfriend is puma?” and I started laughing in my car.   I couldn’t stop laughing.   I hadn’t thought about the miscommunication story in decades.  

We had been on the way to Austria when Jason had said he was going to the food car and would be back shortly.    A few minutes later we reached the border of Austria and the train stopped.   Immigration officers came through the car and asked for our passports—only my boyfriend wasn’t with me.   I showed him both passports, explained the situation.   He returned the passports and then headed down the rest of the car.

A few minutes later my boyfriend came back and said, “I just had the strangest thing happen.   This guy tried to stop me as I was coming up the aisle.   He said, ‘girlfriend is puma?’  I said, ‘yeah yeah’ and brushed by him.”    I was horrified.   I said, “that wasn’t some strange guy, that was the immigration officer.   I told him you were in the food car.  He was saying, ‘girlfriend is Spooner?’”

Spooner was my maiden name.    We laughed about and he retold that story many times while we were together and how he narrowly escaped being arrested by the border patrol.   Good times.

The Big Boy Update: My son created a little thing out of some building blocks yesterday.   He’s good at coming up with names for things he creates.   He said this was was, “The friender trender knock some senser”.   He said, “it’s  what I call it because it can knock some sense into and out of you and it can tell if you’re a good friend.”   High functionality for a thing made of five building blocks.

The Tiny Girl Chronicles:  my husband and I have both lost out tempers at my daughter today.   We’re on the way to the mountains to see my parents and for some reason everything is not right with my daughter.   I can’t explain it.   Perhaps the more vision she loses the more everything is about her. We’re trying.   But she pushes so hard and acts like a spoiled brat.   And at some point we snap.    We’re meeting with Dhruti next week and maybe we’ll get some guidance on how we can work better with her and ease her struggle and in so doing help us.   

The Callapillar

Autocorrect got me twice in my blog post yesterday, changing words I was typing into words it thought I meant.   Which is very helpful (usually) but confusing when corrects to something you didn’t mean at all—confusing and/or funny.    Anyway, I shall leave finding the mistakes in yesterday’s post as an exercise for the reader.   Thanks to the one reader (my husband) who made it clear I had typos by saying, “maybe you could help translate what you mean here…”

That was yesterday, this is today and in this case, the incorrectly spelled word in the title is exactly what I meant it to be.   It’s the way my daughter pronounces the word, “caterpillar”.    She found one the other day with my husband as they were getting the herbs for the tomato sauce for dinner.   She was quite excited about it, carefully coming downstairs to find me at the computer to have me take a picture:



While she showed me this, my husband was drilling holes in the top of a jar.    They put leaves and a bit of water into the jar and then they put the aerated lid on top.   And my daughter was very happy.    She wanted pictures taken because even though she can’t see, she knows pictures capture something you can see.   And while I don’t understand it, there is something about that that’s important to her.   Something that makes her take 2500+ screen shots on her iPad over the course of a few weeks—just so she has a memory of the moment.

The next day we had to let the cal-lah-pil-ler go, I told her.   She said we needed to put him back on the parsley leaves, because he liked them since that’s where they found him.    And, of course, she wanted a picture of the release, so here it is:

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The Big Boy Update:  I asked my son if he wanted to go to the pool with Blake, our sitter, this afternoon.   My son said, “I don’t like going to the pool.  Blake just talks to people.   Last time he got someone’s phone number.”  I asked, “was the someone a girl?”  My son said, “yes.   He said she was attractive, but she was just a normal person.”

The Tiny Girl Chronicles:  My daughter could feel the caterpillar on her hand, but a lot less than I expected her to considering she’s so sensitive to hearing and feeling some things.   But she was very gentle in return.   She was so careful to not hurt the caterpillar.   He was safety released back into the wild (of the deck garden).