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.

Really, Parade Magazine, Really?

A few days ago, I saw a link to an online article from Parade Magazine---6 Great Toys for Children with Autism.  As I'm always on the lookout for toys that might engage Janey, I gave it a click.  Immediately after reading the article, I was so annoyed and upset that I told myself not to write about it until I'd given myself a few days to calm down.  Well, it's been a few days.  I guess I'm not quite as upset any more, but I still am pretty bothered the article.

What's my issue with it?   On a minor note, it bothers me because it feels slapped together, like someone said "Autism is BIG right now, and it's April, autism awareness month!  Let's get an article about autism that is upbeat, stat!"  But my big, major note issue with the article is that it completely and totally assumes every child with autism is high functioning.  

Here's a few quotes--- " As children get older, more complex board games like Boggle, Scrabble, checkers or chess are terrific"    Oh, yeah?  I can't wait until Janey gets a little older and can play Scrabble or chess!  Wait, I forgot, we are living in Realityland here!  Janey is NEVER going to play Scrabble.  I shouldn't say never.  It's highly unlikely Janey will ever play Boggle or Scrabble or chess.  It's highly unlikely she'll ever play Candyland, the game mentioned as being "simple"  Sure, these games might help her with her social communication, as the article helpfully suggests, but that would be assuming she was able to understand them.  And assuming she didn't put the small game pieces in her mouth.

Here's another quote...“It sounds almost too simple, but just a toolbox with a hammer, nails, and a screwdriver can be a great inspiration for play,” says Whitney. “Using tools not only builds fine-motor skills, it also builds a sense of accomplishment when kids can create something they’re proud of.”  Uh, okay.  Why did I never think of that?  I've got to get Janey some nails and a hammer right away.  I'm sure she won't use the hammer to break the TV, or put the nails in her mouth, because she'll be feeling so proud of that castle she's going to build!

And here's a 3rd and final quote, although I could quote the whole article, really...“I’m a huge fan of technology, but I also think it needs to be balanced with other activities that help promote needed skills. So maybe it’s an hour of computer time in exchange for an hour spent playing outside with a friend.”     This one maybe bothered me the most, because it's almost on.  Yes, the iPad is great, and yes, it needs to used in a balanced way.  But the part about an hour outside playing with a friend?  That almost felt cruel.  First of all, Janey doesn't have friends.  She has school friends, that are her friends because we call them her friends, but she doesn't have friends she could dash outside and play with.  If she did, I would still need to be right next to her, to make sure she didn't run away, or eat random things off the ground.  It sounds idyllic---go outside and play with a friend!  But it's not reality.

The article wouldn't bother me as much if it was only Janey it didn't understand.  I certainly don't expect every piece of parenting advice to apply to Janey.  But I would guess the suggestions there would not work for MOST kids with autism, including not only almost all the low-functioning ones, but most of the high functioning kids, too.  It's a perfect example not getting that autistic kids are not just quirky regular kids, kids we can mildly modify regular advice for.  

Parade Magazine is hugely, widely read.  If you didn't know much about autism, and read this article, you'd, well, still not know much about autism.  Or you'd get a picture of a very small percentage of the autistic kids out there.  You'd wonder what the big deal was.  Get them some good cooperative games, maybe a zip line or tennis lessons, take them to a building workshop at Home Depot, have them read a few books that teach socially appropriate behavior, and they'd be fine!   If the article had even ONCE included a note that not all children with autism could access the toys mentioned, that a good percentage of children with autism are also intellectually disabled and require constant supervision, I'd have been fine with it.  But it didn't.  It addresses the imaginary world of autism, one filled with brilliant, slightly different but at the core just the same as you and me, future so bright you've got to wear shades autistic kids.  I don't have that model.  I have a real life autistic kid, my amazing Janey.  And we'll stick with toys that she actually can use.

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.