Special Needs in Russia

In “Joan,” Andrei Gelasimov asks: Will her son ever walk? Will her life ever run smoothly?
Read the story.

Camp Day #4

Today was our last day of camp.  Lilia had her tenth therapy session in four days.  She was pretty happy when it was all over with.

At camp, I met an elementary school teacher who took leave from his job for a year or two to study physical therapy after his son was diagnosed with cerebral palsy.  He became his son’s therapist, and had him walking by the age of four.  He participated in the camp as a trainer.

I also met a grandmother who leaves her house at 5:30 every morning to drive an hour to her daughter’s house and pick up her granddaughter, who has cerebral palsy, and drive her to the school for the disabled.   This woman always had a perfect make up job, and looked incredibly polished, and was also extremely kind and patient with her granddaughter.

I couldn’t resist comparing Lilia’s father and grandmother with these people.  I am only human, y’know?  (And I’m sure that they could find some mothers that I paled against.)

Camp Day #3

Although I admit I was kinda dreading therapy camp, it’s turned out to be pretty fun, aside from the daily chores (yesterday, scrubbing the bath; today mopping the floor).  The other mothers are nice and friendly, and Lilia is having a great time.  Yesterday there was a “festival” at the end of the day.  The children played a couple of games, and then there were a couple of presentations.  The mothers did that boot camp thing. It was like ten minutes of aerobics, and we were all sweating and suffering.  The point was for our kids to see us putting up a valiant effort, and to show that we understand how they feel as they struggle through their exercises.  After that, the trainers (the therapists) performed a few songs.  The head honcho did vocals, and one young woman played the electone.  The other guys were mainly faking it on various percussive instruments.  At any rate, they got a beat going, and one big teenaged kid with cerebral palsy started dancing around.  He was on his knees, flailing his body and clapping, and I thought that in any other place he would inspire pity or embarassment, but there, everyone could see that he was having a good time and it was just normal.  Lilia, ever the ham, went up and joined him.   The therapist in charge of her group said today that part of her training during this camp was to make her do stuff that she doesn’t want to do.  Lilia is quick and strong, and when something came up that she disliked, she would escape.  She’s extremely hard-headed and physically strong, so it’s sometimes difficult to get her to cooperate.  At any rate, the therapist said that having Lilia there brightened everything up.  In addition to being stubborn, she is a very cheerful and silly child. 

Physical Therapy Camp

Today Lilia and I attended Physical Therapy Camp at a school for the disabled.  It actually started two days ago, but there weren’t enough therapists, so we were asked to come starting today.  Of course we were late, which was embarrassing.

This is our first time.  I’d heard some rumors, like that the therapy sessions were conducted in the un-air-conditioned gymnasium (It’s about 30 degrees out there.) and that the mothers would be busy cleaning.  Oh, joy.  Happily, therapy took place in a cool room, but the second rumor turned out to be true.  I was told that I was on the laundry committee today.  Laundry?!  Apparently the parents are in charge of washing and hanging out the the therapists’ clothes.  There were just a few things to hang out, however, so we had to help sweep the hallways.  Which were very, very hot.  They don’t open the windows because bugs will come in.  They don’t do screens here for some reason.

Anyway, after sweeping, we had to quick, prepare trays of drinks for the therapists and our children, then it was on to a workshop where we parents learned how to properly stretch our children.  After that, we had a little break during which we practiced our skit, which I found out is “Mother’s Boot Camp.”  One mother pretends to be a sort of drill sargeant and takes us through ten minutes of intensive exercises – push-ups and stuff.  Did I say it was hot?  And then it was time for the mothers to prepare lunch.  The meal was followed by naptime/break time, and then there was a craft session, during which Lilia made a wind chime. She seemed to be having a really good time, and had already become attached to her therapist.  There was a third therapy session after crafts.

There’ll be more of the same tomorrow through Tuesday.

Jio didn’t want to go, so I let him stay here with his grandmother in the morning.  He went to a friend’s house after lunch.  I gave my mother-in-law something to warm up for Jio’s lunch.  He doesn’t take much looking after, and probably was just reading in his room or doing homework.  When we got home, however, my mother-in-law said that she was exhausted from having to climb the stairs to see what Jio was up to.  Funnily enough, she doesn’t seem to get exhausted by climbing up the stairs ten times a day to check up on me.

Signing Harry Potter

Unlike most children in the world, my eight-year-old son isn’t very interested in Harry Potter – neither the movies nor the books.   We have three volumes of the series on the shelves, which I’ve been planning to read with him when he’s ready, but he finds the length and the lack of illustrations daunting.  The movies, he says, judging from the trailers, “are violent.”

Last night “Harry Potter and the Chamber of Secrets” was on TV.  We happened to tune in halfway through.  My eight-year-old daughter, who lights up in recognition whenever she sees a movie poster, immediately became engrossed in the onscreen action.  Until recently, she has been happy just watching and imagining, but these days she wants to know what’s going on.  So every few seconds, she would look at me in an inquiring way, waiting for me to interpret. 

Harry Potter is pretty complicated and my signing is rudimentary.  Plus, I didn’t really know what was going on, having missed the first hour of the movie.  My rendering was very simple.  I interpreted Professor Dumbledore  as “grandfather teacher” and one entire conversation as “He doesn’t like Harry.”  With over an hour left to go of the movie, I could tell it was going to be a long night.  At the commercial break, I told Lilia that we would rent it at a later date and watch the whole thing from start to finish.  And maybe, I thought wildly, I’ll hire a simultaneous interpreter so that Lilia will be able to understand what is going on.

My Argument Against Juku

Tomorrow I’m meeting with my son’s teacher for our parent-teacher conference.  Although this has not yet happened, I always imagine that the teacher is going to ask me to send my son to juku.  I’ve heard of this happening at other competitive and/or private schools, and I know that many of the kids at my son’s school go to cram schools after they finish regular school at 4PM (which is at least an hour longer more than public school).  When my son was in first grade, his teacher wanted to keep him after school to work on arithmetic.  It’s not that he couldn’t do it; it’s just that the other kids were faster, having gone to cram schools probably since they were about three years old.  Kumon is raking in the bucks, let me tell you.  I wasn’t particularly bothered by the fact that my son was a little slow to compute.   I’m more concerned about him developing his imagination and getting enough fresh air. But there is always pressure.  The schools want their students to score high ’cause it makes them look good, even though these kids are getting drilled outside of school and the teachers really have no right to take the credit.

So why do these parents send their kids to cram school?  Well, I guess it’s because they want their kids to get into a decent high school, then into a decent college, and then they can be well-employed.  The thing is, with the declining birth rates, these days many colleges are in danger of being closed down for lack of students.  It’s pretty difficult to get turned down at some of them.  Some of my college professor friends are having to spend lots of time trying to recruit high school students.  If things continue as they are – and they probably will since Japan is so xenophobic that it won’t even admit refugees (who tend to work hard)  and women are getting married later and later and having fewer and fewer children - my son will have his pick of jobs by the time he is ready to enter society.  Maybe by then, companies will be so desperate, they’ll even be willing to hire disabled people.

More on Boys Who Cry

So you may be wondering what happened with the summer baseball tournament.  Having read the title of this post, you’ve probably guessed already that my husband’s team…lost.  I was there for their first game of the tournament, sweating beneath my black parasol in the 30 degree Centrigrade heat.  There were a lot of exciting plays including a homerun by one of Kita High School’s hitters in the first inning, a couple of guys tagged out when they stepped off third base.  I thought they played their hearts out.  At the bottom of the ninth, the score was tied 7-7. The other team was up at bat with two outs, and a runner on third.  I had to leave at that point to pick up Lilia from school.  I heard later that the game went on for two more innings.  According to the newspaper, my husband consoled his crying players.  I’m not sure which is worse – to lose in the very first game, knowing that you have a strong team, or the very last game (like last summer).  The next day, he got an anonymous phone call at work.  Some guy ( a father?) called up and said, in a menacing voice, “I saw that game.”  So is our house going to get TPed  or something over high school baseball???

Summer Vacation

Today marks the beginning of Lilia’s summer vacation.  (My son still has a couple days to go.)  I got my daughter to do two pages of homework.  Only about 98 more pages to go.  Seriously.  I’m always somewhat bemused by the amount of homework the teachers load on during summer vacation, as if homework and vacation even belong in the same sentence!  She never manages to get it done.  Making her put a sticker on a chart every day after brushing her teeth gets a little tedious after week #1.  But this year, she has a shot at finishing the workbooks (about 50 pages each) because I have hired a tutor!  The tutor is a lovely young woman skilled at sign language with a teaching degree.  How perfect is that?!  I felt a little guilty at first, having lived among self-sacrificing Japanese mothers for such a long time, but at least I’m not sending my kids to cram school.

Houston, We Have a Title!

I’m happy to report that we (meaning my editors at Beacon) have finally come up with a title for my anthology of literature on parenting disabled children.  My original title was However Green the Cup, which was taken from a the lines of poem by contributor John Morgan: …”what we hold too close our hands/may crush, however green that cup, however full.”  My editor said that her colleagues thought the title elicited a dirty glass with green scum, and also said that it was too cryptic.  My second choice title (which I never brought up because I realized no one would go for it) was It’s Sad to Be Poor and Living in Kansas, taken from a poem by Michele Battiste.  The real title is….drum roll, please….Love You to Pieces: Creative Writers on Raising Children with Special Needs.  I love this title because it is warm and fuzzy, like my mother said, but it also suggests something darker – loving something that’s in pieces, loving someone absoutely and desperately, loving someone in a way that breaks your heart. 

 I love the title, and I hope that readers love the book as much as I do when it comes out next spring.

Woman on the Other Shore

Judging by most of the Japanese novels that make it into English, you might think that modern Japanese lit is all about wild sheep chases, forked tongues, and chopped up bodies.  The Japanese, one might think, are truly hen.  Thus, on a recent visit to the bookstore, I was happy to discover Woman on the Other Shore by Mitsuyo Kakuta, a novel about two relatively normal 35-year-old women – a stay-at-home mom, and a single woman who has her own business. 

This is not another one of those books about the so-called Mommy Wars, although there are some self-righteous SAHMs going on about mothers who work.  Basically, this is a book about friendship, or the lack thereof.  Sayoko, the mother, can’t seem to fit in with the other moms when she goes to the park.  She winds up “park-hopping,” changing venues every time the moms start to get cliquey.  If you live in Japan, you’ve probably heard about the kind of ostracism practiced by moms in parks.)  The other woman, Aoi, was bullied throughout her school years, and finds it difficult to forge close relationships.

When Sayoko decides to give up park-hopping and begins a job at Aoi’s company, the two form an unlikely friendship, which is threatened by the latter’s dark past.

I liked this carefully constructed, award-winning book very much, but it took me a while to get through it.  For one thing, I had to keep stopping to clean my house.  See, one part of Aoi’s business is a housekeeping service. I’d read, “…her kitchen was a hellhole of garbage, grease, and food scraps, the washing area next to the bathtub was overrun by mold and mildew, and the toilet bowl was surrounded by thick layers of dust on the floor and practically black inside” and I’d think, “I’d better do something about that mold in the shower!”   

I also felt that the book sometimes hit a little too close to home.  Like Sayoko, I’ve had a hard time fitting in with the mothers at my daughter’s school.  While it’s partly my own fault (I should have been drinking instant coffee with the other mothers instead of using my precious time to work on my novel and/or anthology in the library!!) and I realize that as an older, foreign mother with a differently disabled child, it’s virtually impossible for me to become close to the younger Tokushima-born women who can’t wait to mainstream their children, I do at times feel the shame of the ostracized.  AND I worry about my kids growing up in this kind of society.

Having said that, Woman on the Other Shore is a book worth reading.  Thanks to Wayne P. Lammers for translating it.