The Big Bag of Toys

Janey is continuing her current wonderful stretch of happiness, with a little more talking added in to the mix.  It's been fantastic.  I need to remember days like this when there are days way at the other end of the pendulum, that there are days when Janey is just amazingly sweet, happy, funny, cooperative, engaged...I need to savor every second of these days.

When looking for something in our cellar, I came across a huge bag of toys I had stored at some point.  I think I put them away when Janey was about 5, possibly during the awful, awful period of time she had then, when she cried for about 2 weeks on end.  My memory of that time is a little hazy, but I think I was trying to clear out the house to try to somehow make it better for Janey, and I decided to put away a lot of toys she had no interest in.  It was like a time capsule, almost---toys that Janey had liked at 2, but that by age 5 she ignored.  There were lots of Care Bears, assorted stuffed dogs, a Bitty Baby and a Cabbage Patch Doll.  It was hard looking at them all.  I remembered the boys gave her the Cabbage Patch Doll for her 2nd Christmas (with my help).  I bought the Bitty Baby actually for myself, actually, when I had realized I wasn't ever going to have a girl.  A month or so later, I was pregnant with Janey.  Janey loved dogs for her first few years more than anything, until she suddenly stopped noticing them, and then became extremely afraid of them.  And Care Bears?  There was a time when Janey knew their names, asked for them at stores, was a huge fan.

I decided to bring a few of the toys up, mainly the Bitty Baby and the Cabbage Patch Doll.  I had them waiting for Janey when she got home.  There wasn't any miracle---she didn't suddenly want to play dolls---but she looked at Bitty for a long time, especially her eyes.  And when I handed her Cabbage Patch, I wanted to think I saw a tiny bit of recognition in her face.  I asked her "What is the doll's name?" and she actually said "It's name is Til...." and then looked away.  I jumped on it---"Her name is Tilly?  Hi, Tilly!  Are you Janey's doll?  Let's play with Tilly!"  Janey humored me with a smile, and I had Tilly kiss her, I brushed Tilly's hair, we looked at her fingers and toes and belly button---I had fun.  Janey I don't think really cared, but she didn't actively try to stop me.

I think the dolls are going to stay around for a while.  I think I'm ready for it.  They don't make me as sad as they did for a while.  I know the long, long ago Janey that had an interest in them might not be coming back.  But the Janey I have now---well, if she doesn't want to play with dolls, it is okay.  She has her own things.  She loves to run and jump, she has varied and cool taste in music, she can run YouTube like a pro, and just this morning, when one of her classmates greeted her, she let go of my hand and went to hold her friend's hand, and smiled a huge smile.  Janey is becoming her own person.  Like any child, she is not always exactly the child I pictured.  I am not blinded to the reality that she is in many ways severely disabled, that she is not like other children in some very big ways, that her life will be affected hugely by her limitations.  But with all that being said, she is perfect at being Janey, and I love the Janey she is.

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.

Over the American Girl Catalog

I never really dreamed of having a girl for a lot of the reasons I've heard of.  I'm not terribly into frilly clothes, I certainly am not into pageants, I almost never wear makeup or paint my fingernails or buy new clothes.  I never had a dream of a big wedding, or ballet classes, or Disney Princesses.  But I did have one big dream for a girl I might someday have.  I had a dream of getting her an American Girl doll.

Of course, there weren't American Girl dolls when I was little, but there were sure dolls.  And that was one part of being a girl I embraced heartily.  My sister Carrie and I had lots of dolls, and lots of doll clothes.  We each had a doll family, and we played dolls often.  We added a lot of twists to it---our dolls had a rare genetic disease that one after one they were tragically diagnosed with---Ingalls Syndrome.  It was named I think in honor of Laura Ingalls Wilder, although it had nothing to do with her.  It resulted in the dolls being, well, doll-like, floppy and unable to walk on their own.  Despite their challenges, our dolls lived full lives of going to school and visiting their cousins, all of which required a lot of changes of clothes and elaborate setups.  When I was even younger, I had a favorite doll named Janie, after my aunt.  You might guess where Janey got her name---after the aunt and my doll.  Dolls were a huge part of my life.

And then, pretty much as I entered adulthood, there came the American Girl dolls.  The first time I saw a catalog, I knew that someday, I would have a little girl and she would sit with me, looking at said catalog, and we would decide what girl would be hers.  We would order it, and then every Christmas and birthday, we would get a few more of the clothes and accessories.  Maybe, we would get a second doll at some point, so they could be friends.  It would be a wonderful mother-daughter bonding time.  Each new catalog would thrill us.  The doll would be almost like one of the family.

And then, I had two boys.  They are wonderful kids, but despite me trying, they never got into dolls.  Believe, I tried more than most people thought was normal, but they were not doll lovers.  The moment the nurse told me on the phone that child #3 was going to be a girl, I screamed, called Tony and started thinking about the American Girl catalog.  Sick, yes, but I am admitting it here.

You know a lot of the rest of the story.  When Janey was three, old enough to be the age that was supposed to be ready for American Girls, to not choke on all the adorable little accessories, she was diagnosed as autistic. I still of course had my doll plans.  But I put them aside, and realized they were pretty unimportant. That they always had been unimportant, a dream of mine and not of Janey's.  I did get her dolls, of course, and I tried mightily to interest her in them, without success.  She didn't, and doesn't, play imaginatively.  She liked tossing the dolls around sometimes (much like her brothers had), but not certainly sitting them down at their expensive little tables and feeding them their expensive pretend picnic lunches or loading their expensive backpacks with expensive adorable tiny school supplies.  

The American Girl Dolls catalogs kept arriving, of course, and I kept looking.  In most ways, I think I've been fairly good at accepting Janey as she is, but in that one little way, I kept dreaming of a Janey that wasn't.

So it shocked me a bit yesterday when the big Christmas American Girl catalog arrived.  I waited until Janey was asleep to look at it.  And I realized, quite quickly, I was over it.  I no longer cared a thing about it, or about Janey not being the girls in it, playing with their dolls.  In fact, the girls looked annoying to me.  Didn't they have anything better to do in life than pose their dolls?  Were their parents so full of money and stupid as to shell out big bucks for tiny little doll shoes or miniature pastries or Julie's new VW?  Why did all the girl models look so cookie-cutter---diverse on the surface, but all neurotypical?  And why was the American Girl world so phony?  Why did even historical girls have modern aspirations?  Why is every doll and girl thin and perfectly groomed and able to afford vast numbers of accessories?  Why are they all into sports and fair play and friends?  Why are none of them shy, or awkward, or preferring to sit and read over getting out there and having exciting yet safe adventures?  Why are none of them autistic?

I realized I no longer long for that world, which I guess has always been more than just a doll thing.  I don't long for that life, the life of the perfect American Girl, or American girl in lower case, the dream we are supposed to dream of.  I still wish life was much easier for Janey.  I wish she wasn't autistic, because that is a hard life for her.  But I don't wish any more, not at all, for the girl that would want an American Girl.  I'm over that.  I have the girl I have, and she is just as much an American girl as any of them.  More so than the plastic, accessory rich, expensive version, because she is real.

Autism and Toys --- Some Thoughts

I've written before about how hard it is to find toys that engage Janey. It's something that has frustrated me for years. She has little interest in most toys, and is unable to use others, due to the difficulty of operating them or the small and dangerous pieces she might put in her mouth, or just due to her love of tossing things all over the floor and losing them. We are left with few toys that work for her, and this is upsetting to me, as I am a big believer in toys and how important they are for kids. I've figured out a few things that work for us over the years, and here are a few ideas...

1. Fidget toys. These are usually things actually designed for people to have at their desks in offices, and to play around with as a way to fidget. Not all of these are at all suitable, of course, like things with magnets or breakable ones, but lots are---mushy figures you can push in, Tangles that can be turned in all directions, Kushie type toys, toys with water inside you can move from side to side to see the waves move, things like that. I have gotten a lot of these from office supply sites.

2. Baby toys. I used to resist these, wanting Janey to have "age-appropriate" toys, but lately I've kind of given up on that. Baby toys are pretty cool these days! They have all kinds of textures, they often make noise or play music, they are non-breakable and can't be eaten---in a lot of ways, they are perfect for Janey. She is most interested in electronic ones, like V-Tech or LeapFrog toys, and I've had good luck finding them used.

3. Water toys. Janey, like so many kids with autism, loves water. She loves being in the bath or the wading pool or any kind of swimming. Anything that can stand water is a great toy for her. She loves to toss things in water and see what happens, so it's great to find toys that allow that.

4. Balls. Janey loves to kick or throw balls. She is getting better at it! I try to find balls that are safe for the house somewhat, so she can use them all year round.

5. Stuffed Animals. This is a new category for Janey, because I have a new approach to them. I'd never buy one new unless it was a very special circumstance, but at the thrift store I like, they sell big bags stuffed VERY full of assorted stuffed animals, for usually $4. They have about 15 toys in them! I take these in the car, and hand one to Janey at the beginning of almost every drive. She likes holding them, feeling the textures and exploring them, and every now and then she finds one she gets attached to, like recently a monkey and an elephant. I think of them as disposable, as it's impossible to keep her from sometimes wrecking them or losing them, but at that price, it's okay.

6. Bubbles. Janey has learned how to blow bubbles herself, although you have to watch her pretty carefully so she doesn't spill the whole jar of them the minute she picks them up. She also loves bubbles blown for her.

There are some toys you always see in lists of "Best Toys for Autism" that just don't cut it for Janey. A lot of these are toys that are for higher functioning kids with autism, like Geosafari toys or complicated train sets. Puzzles don't work well, just because she will so often toss the pieces, and I don't have the organizational skills to keep track of them well. Playdoh WOULD be great, as she loves it, but she loves to eat it as much as play with it, and although we've given it second and third and fourth chances, she can't resist. Although I think she likes to draw and paint at school, at home, she doesn't seem to care for it. And she has never shown much interest at all in dolls, which is probably one of my biggest areas of sadness about her. It's my dream, not hers, to have a daughter that loved dolls as I did.

Of course, one of her favorite "toys" is her iPad, but that's a different category I'll write about soon!

Two weeks until six

Janey will be six two weeks from today. Birthdays always bring up a nest of feelings. Every year, I think to myself "Maybe next year she'll know what a birthday is, look forward to it, get excited about it". I think this year I'll stop thinking that. I get with her like people get about getting older---I don't want her to get to be older, because that's just putting her further from where she "should" be mentally. That's a bad thought, but a truthful one.

Presents are another nest of bees. She already got one present, from the very wonderful lady who has volunteered to work with her this summer. It was so nice---a fairy wand that is perfect for her, and wooden bears you can change the expressions of. And of course Janey had the typical gift reaction---freaking out, screaming, throwing it around. And the woman was hurt, despite trying not to be. And I was mortified. And of course within an hour, the fairy wand was her favorite thing ever---she's loved it right to death already. But presents are tough---they aren't expected, they require a reaction she doesn't understand, they are nightmares for her in some ways. As would be a typical birthday party. And that's fine---for her. For me, it's harder. I still hold onto the dream of giving her a little girl party, with some special presents that she will be thrilled about. I dream of getting the American Girl catalog and going through it with her page by page, talking about what we would order if we could, and maybe picking out a few special thing to get, and some Christmas blowing all my money and buying her a doll and furniture and it being something she remembers always....and it's never going to happen. And I need to get over that.

I ordered her presents from a web site I should give a shout-out to, for other parents of autistic kids. It's officeplayground.com They are aimed at little toys for use in offices, but they realize a lot of the same toys work for autistic people. They have all kinds of "fidget" toys, things you can play around with using your hands, like stress balls, Tangles, those toys with water inside that looks like waves, etc. Their prices were good and I ordered her about 10 little toys. I hope she likes them. It felt like a realization. I didn't try to get her typical 6 year old toys, because that's what I wanted to get. I tried to get her something she'd love. I need to do that with as many aspects of her life as I can. She fights such an uphill battle just fitting into this world; I don't need to add to it.

Her birthday is also Freddy's birthday---he will be 13. Maybe that all was arranged somehow---that I'd have another birthday the same day. Who knows? Freddy wishes he had his own day! He's ready to be a teenager---he's been one for a while. It makes both their birthdays very special to me. I'm so lucky to have them both, and their brother William.


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