These Happy Golden Moments

The title, of course, is a modification of one of my favorite book titles, "These Happy Golden Years" by Laura Ingalls Wilder.  I hope some day I'll have a whole golden year, but for now, golden moments are enough, and last night, I had two of them, the kind of moments I think of in my head as movie-ending moments---moments that if you wanted to show a happy ending, you could freeze my life at, and you'd have one.  Life doesn't freeze like that, but that probably makes the moments even more of a treasure.

Movie-ending moment one----Freddy and Janey are playing in the back yard.  Freddy is fooling around with a long stick---balancing it on one hand, and then one finger.  Janey is watching him with admiration, really paying attention to him, with the kind of look that younger siblings get when their older siblings do something that looks amazing to them.  I am sitting watching them.  The sun is low in the sky, and it hits a point where it lights up both Freddy and Janey's hair---Freddy's curly mop and Janey's blond straight tresses.  For an instant, they both look like they are lit up from within, a flash-bulb scene of childhood and happiness.

Movie-ending moment two---Janey comes up to me and says "Do you want teat?"  I am surprised.  We are mainly coffee people, although we have tea on occasion, and I had no idea she knew that word.  I ask her to show me the tea, and she goes to the kitchen and first points to the cold coffee in the coffeemaker.  I say "Oh, you want coffee?" and she then points up to a high shelf, where weeks ago we put 4 small teacups she had picked out at the thrift store we loved, bagged together.  We had washed them but then put them out of reach, as they were delicate, and hadn't mentioned them since.  I get them down, and she eagerly takes two and puts them on the table, and leads me back over to the coffee, saying "Would you like some tea?" and finally the dense me gets it.  She wants to have a tea party.  I pour some cold coffee in both teacups, and she hands one to me, politely saying "Would you care for tea?"  I take my cup, she takes hers, and then raises it to me and says "Cheers!  Salute!"  We toast, and we take a sip---hers not actually reaching her mouth, as for the first time, we are playing a pretend game.  We are having a tea party.  And I am crying.

When you first realize that you have a child with significant disabilities---which is different than when they are diagnosed, as it's the moment it becomes real, the moment you realize they aren't going to ever be "cured", the moment you see that you have taken a very unexpected turn and are indeed headed for Holland instead of Paris---you give up a lot of dreams.  I'm not afraid to say that's hard.  I don't dream of Janey getting a high school or college degree.  I don't dream of her getting married, or having my grandchildren.  And for a while, that can feel like despair, like a life of giving and not ever getting back.  A perfect mother would say that's what a mother should do, but I think in real life, every mother dreams of the moments that seem like rewards.  I am here to say that those moments do happen with children like Janey.  There are wonderful moments, Happy Golden Moments, and they are as sweet as moments can be.

Games with Janey

One of the challenges with Janey is finding ways to play with her.  Playing keeps her engaged, and it gives us a chance to work on turn taking, speech, imagination---and most importantly, I want her to have fun!  But like a lot of things I try to do with Janey, it's easier said than done.  Actual, structured games like board games are beyond Janey.  Often I resort to baby type games with her, like patty cake or Here We Go To Boston or even basic peek-a-boo.  But Janey's not a baby, and although she enjoys those games, they don't have a lot of scope for expansion.  Imaginative play doesn't really work.  Janey doesn't get it, and since doing real things like using the phone are not something she can do, pretending to use the phone or pretending to put a baby to bed or so on are not fun for her.  If you don't get what you are pretending, it's hard to pretend.

There's a few things that work.  One is playing catch.  Janey loves to catch and throw balls.  She's no expert, and she misses most of the time when catching, but that doesn't bother her.  She's not that bad at throwing!  I crocheted a ball out of yarn and stuffed it, for safe in the house play, and the other weekend all 5 of us had a very good time tossing it around.  We play with balloons sometimes too, and kick a ball around outside on occasion.  Another favorite of Janey's is one she plays mostly with Freddy---the "I'm going to get you!" game.  He chases her around yelling "I'm going to get you!" and then catches up with her and grabs her shoulder and says "I got you!"  She screams in excitement and then runs off again, turning around now and then to say "I'm going to get you!" to spur Freddy on.

The cats provide us with a lot of entertainment, and I am really pleased that lately Janey seems to notice them a lot more.  She likes gently patting them, and she LOVES the game where I pretend they should be able to talk.  When I tell them to say hi to her, she laughs and laughs.  I think on some level she gets it---cats can't talk, but I'm telling them to talk!  She probably relates to that quite a bit.  And I can get out a little frustration with what I say to the cats "Now, come on, Ash!  You could at least say 'Hi' to Janey!  Be polite and say hi to her!"  The cats never do, so we settle for them giving Janey a high five.  That game can keep her happy for long, long periods, until the cats get fed up and leave.

Last night we had a long round of another of her favorites---Ghost.  This means just putting a blanket over her head or mine and saying we are a ghost.  It actually allows a lot of work on skills.  I can ask Janey if she wants to be the ghost next or if she wants me to, I can give her ideas what to say as a ghost (mostly OOOOOOOO, but we mix it up a little with some "I've come to haunt you!" and so on), we can work on pretend and real when I pretend I really think Janey is a ghost, and then she takes a blanket off and I made a big deal of being relieved it's just my sweet Janey.  We can easily involve other people by going in to scare Freddy or William while they do homework.  And I can introduce words---last night we worked on "double" and "two" by being a double ghost together---the scariest kind of ghost of all, I used to always say when the boys were a double ghost to scare me, back in the day!

As fun as the few games Janey get into can be, it's also frustrating work to play with her.  She never introduces new twists on her own.  She'd be happy if I just played peek-a-boo with her for hours on end.  I have to be very careful to try to vary what I say during games, or it becomes a fixed piece of echolalia forever associated with that game, and she gets upset if I don't say the right thing.  And perhaps the hardest part is that Janey rarely seeks out playing.  She'd  probably frankly be happier if I just mostly left her alone to watch a video or bite on a biteable toy.  It can start to feel like a one-man show playing with her after a short time.  But I do have to believe it's valuable time.  Even if she learns nothing from playing, if she's enjoying herself and enjoying my company for a few minutes, that's a plus.  That's what we want our kids to have as part of their childhood---happy interactions with their parents stored somewhere in the memory banks.  I hope Janey's brain has a place with that kind of memory.

Dreaming Small

I don't dream much about Janey.  I don't dream much about my kids at all, or my current life, although I dream all night every night.  In my dreams, I've gone to high school and college about a thousand times over, sometimes vaguely aware that I am redoing an experience.  But the last 20 years of my life are barely there in my dream world---I have no idea why.  Last night, though, I had a dream about Janey, and it struck me in how mildly it changed reality.  I am dreaming small lately.

In the dream, I took Janey to a very upscale kids clothing store.  I wanted to get her some fancy clothes for a party.  I held her hand constantly, as I would do in real life, and we looked at the rather meager selections the store had.  I noticed there was an upstairs, and so we went up there.  It was in the form of a loft, completely open to the downstairs with no railing or anything, but that didn't seem to bother me.  I found some promising looking clothes, and Janey found a dollhouse and some play teacups.  There was a slightly older girl there who started playing with Janey, and so I let my guard down.  So much so that when somehow my parents showed up and needed me to walk about a block away to help them with something, I just left Janey there.  When I got back, she was fine, but all dirty and without her shoes.  She said to me "We went out to play in a meadow"  Even in the dream, I realized that was a pretty great sentence from her, and praised her for it.  And that was it, except for a long drawn out part of looking for her shoes and the nasty shopkeeper being annoyed I had lost them.

And I wonder---why don't I go all out in dreams?  Why isn't Janey talking fluently, not autistic at all?  The Janey in this dream was mostly the real Janey, just a better talker, and even then, the dream world knew that was an unusually good utterance.  Of course, there's no answer to those questions.  Nobody understands dreams.  But if there was a meaning, I'd say it was one of acceptance.  Janey isn't going to change drastically.  The little changes are what I hope for now, the little triumphs.  They make me happy.  Her autism is a basic part of her, even in my dreams.

Under The Breath Talking

Yesterday, Janey was holding the LaLaLoopsy doll I got her for Christmas.  I asked her, in the way that I am constantly talking to her without expecting an answer "What is your dolly's name?"  She then talked under her breath, and I think she said "Elizabeth"  I said "Is Elizabeth your friend?" and got another under the breath answer, which I took as "my best friend"

This set up a perfect example of something that Janey has done since she was very, very little, before even the regression.  She says some of her most conversational and meaningful things in a very, very low voice, not quite a whisper but a fast and low tone that is quite hard to hear or understand.  And I am never sure if I am hearing and understanding her correctly.  It's an example of the Ouija Board phenomenon, as I think of it.  I WANT her to be saying certainly things, and so maybe my mind assigns that meaning to sounds that don't really mean that.  Or maybe she really does say meaningful things in a voice that's hard to understand.  This one was a case of something I'd love almost more than anything---for Janey to be playing with a doll, for her to have an imaginative life like that.  The very fact I was asking her the questions about the doll shows that.  And the human mind is good at making the world what it wants the world to be.  So did Janey mutter something at random and I heard "Elizabeth"?  Or did she say that?

I couldn't get any more from her about the subject.  She just went back to playing with the doll in her favorite way to play with anything---biting on Elizabath or Not-Elizabeth's foot.  But she was having a great day, and in general was alert and happy, so who knows?  Maybe sometimes we have to play those games with our mind.  Maybe that's part of how language happens---the first "Dada" and "Mama" might not really be those words, but we make them so, and they become meaningful.  Maybe I shouldn't care.  Maybe I shouldn't be so determined to make sure I'm never being fooled.  Maybe I will find Elizabeth and put her in bed with Janey and just feel happy, for now.

A Christmas Present for you!

Here's a present for you, my dear readers!  It's Janey giving you a Christmas Panettone!  For those of you who didn't marry into Italian families, a Panettone is a Christmas type sweet bread, with raisins and glaze.  I am not that huge a fan of them, but they are sort of like fruitcakes or cranberry sauce or candy corns---holiday foods you just have to get whether you like them or not.  Janey is in love with the boxes.  She spent a lot of time yesterday doing very, very rare pretend play with them.  She'd bring a couple boxes (one empty, one still with the bread) over to one of us and hand it to us, then we were supposed to give it back to her and say "Here's a present!  Merry Christmas!", and then she'd take it to someone else.  A pretty basic game, but a great one to see her playing, maybe getting ready to actually open and perhaps even break a smile at some of the presents for her tomorrow.

Merry Christmas to everyone, or Merry other holidays if you don't celebrate Christmas!  I can never be sure how many people actually read this, but it's always amazing and hugely thrilling to me that anyone does.  I appreciate the chance to write here and share my thoughts, and I hope anyone reading this has a wonderful day tomorrow.