Janey is not materialistic, and that's a problem

If you look up how to get a child with autism to do something they aren't inclined to do, there is almost always the same answer.  Use a motivator.  Use a reward.  Give it consistently for the target behavior, and not at other times.

When thinking about this, I thought at first "There's nothing that motivates Janey consistently"  But that's not really the case.  There is a lot that motivates Janey, but there is almost nothing that can be given as a reward to her easily.  There is a lot she loves, but not a lot that I would be able to only give her as a reward.

A typical rewards chart

What does Janey love?  What motivates her?  Silly attention, as the first thing that comes into mind---joking around with her with funny voices, or little games.  She lives for things like playing Creep Mouse or pretend tickle or high five with the whole "too slow" routine.  She adores those games.  But she doesn't adore any single one enough for it to work as a motivator for something like ABA or toilet use.  And I can't, or won't, withhold playful attention, the main way she likes to interact, to be something she only gets when she performs.

She loves music, of course.  But there isn't a certain song that would always be a reward.  She likes variety.  And it's not a case of any music.  It's not like she'd be willing to work to hear something she doesn't like or care about.  And again, I would never withhold music, her basically only hobby, from her, hold it out to get her to do what I want.  That would be cruel.

She loves food.  And I'd be fine with having some certain food be a reward for ABA or the like.  But there is no one food she's always into.  Some days, she adores chips or M&Ms, other days, she could care less about them.  Even the kind of foods that could work at home but not at school, like bacon or home fries, are not always something she wants.  Like most of us, she is in the mood for something different on different days.

Trinkets still motivate ME!

What about toys, or stickers, or beads, or something like that?  No, not at all.  She enjoys me looking at her sticker book with her, but actually putting individual stickers in it, or getting stickers as a prize---no interest.  There is not really a toy in the world she cares about.  In fact, there is not really any non-food physical object she is motivated by.  She is not materialistic, in the true meaning of the word.  Material things don't much interest her.

She likes a car ride, but not all the time, and in practicality, it's not something that would work as a reward---certainly not at school, and not all the time at home.  We are not going to put her in the car at 10 at night for using the toilet.  And it isn't practical to tell her she can't have a car ride until she does certain things.  Sometimes, we need her to go in the car.

As does candy...

I know that many kids with autism have a special interest---something that is hugely motivating to them.  And it seems like most programs to teach kids with autism skills count on this.  I don't know if Janey is unusual in there really not being a motivator for her that is usable as a reward.  I know she's not totally alone there----I'm thinking of you, Lindsey, and wondering if others have experienced this with their girls.

In some ways, I admire Janey.  She doesn't have the monkey on her back that almost all of us have---desire for what we don't have.  The things she loves most in life are free things---playing silly games with Mama or Daddy or her brothers, listening to the right song at the right time, being out and about and seeing the world.  But today, as I walked around the Target and looked at all the toys and snacks and stickers and countless things that would have been a huge reward to me (and still would be, to be truthful), I wished very much that teaching Janey could be achieved with something I could buy.

Mostly just pictures!

I took a bunch of pictures of Janey tonight, and thought I'd share them in a mostly just pictures post!  We have a routine with taking pictures which she loves.  I pretend to tickle her (she doesn't like to be actually tickled, but she loves me to say "tickle-tickle!" with my hands in tickle position), and then I take a picture, to get a smile!  Not that I only want smiling pictures of her, but I love seeing her smile.

Here's Janey playing with kinetic sand, a wonderful present from a dear friend.  It's the first toy in years Janey has had an interest in, and she loves it.

Smiling in the sunlight

I love to see my Janey happy.

Another big smile!

My shadow taking her picture!  Janey has the blessing or curse to have the family hair, thick and very curly.  Her brothers both have it too, as do assorted members of my family (not me!)  It changed when she was about 7 from being straight and very blond to being ash blond and curly.

Janey pointing!  She doesn't point a lot, except at herself as a way of saying "I want that", so this was a lucky shot.  She was wanting Tony to hurry up and come down to the driveway to take her for a car ride.

A full life vs. the trifecta

It's the doldrums of winter.  It's hard for everyone, but I'm realizing that it's harder for Janey than most.  I think the next big challenge we are facing is how to give her an interesting life, a meaningful life, a full life.

I think about myself at age 11, or my sons at that age.  Life gets pretty interesting around that time.  You are old enough to have your own interests and passions.  You have made friends---friends that might become lifelong friends.  You go to their houses and they come to yours.  You are starting to be able to be out in the world by yourself.  You are turning into the person you will be for life.

Then I think about Janey's life at 11.  She goes to school.  She comes home.  That's about it.

There are many, many barriers to giving Janey a more meaningful life.  The big one is that she has the trifecta of autism, severe intellectual disability and behavioral issues.  Any one of those alone is tough enough, but the three together cause barriers to almost any organized type activity we might want to pursue for her.  I can't tell you how many times I've heard about a new possible class or program or camp or so on that might work for Janey, only to look into the details and find that it would be impossible, due to one or more of her challenges.  Saturday special needs city programming?  You have to be able to be in groups of 4 kids to 1 adult.  Music lessons for kids with autism?  You have to already know how to play an instrument and have to be able to read music.  So, so many camps?  You have to be toilet trained.  You have to have no self-injurious behaviors.  Hundreds more promising sounding enrichment activities that are "inclusive"?  Inclusive if your child can follow directions, not run away, read, write, not need constant supervision.  Respite houses for the disabled?  Not for kids that need one on one care.

So I say---okay.  We'll do it ourselves.  We will enrich Janey's life.  During recent snow days, I woke with a determination to give Janey an interesting day, a full day.  And every attempt to interest her in anything other than videos was met by screaming, by her biting her arm, by fury, or if not fury, complete disinterest.  I tried---reading books, playing with toys, involving her in cooking, putting on a children's yoga video, taking her out in the snow---I tried everything I could think of.  Janey was not interested.  Part of this, I think, is that in some deep ways, she's a regular pre-teen.  I'm her mother.  I'm not who she wants to hang out with.  And part of it is the combination of the trifecta.  The autism makes her not that interested in new activities.  The intellectual disability makes it hard for her to understand so much---how to use toys, how to hold a writing utensil, how to understand what is read to her.  And her behavioral issues make her prone to lashing out when the first two kick in.  I try to put myself in her shoes.  What is someone tried to get me to do something that I am not interested in and didn't understand?  What if someone proposed a fun day of doing calculus equations?  I'd be lashing out pretty quickly, and I don't have behavioral issues.

So what do we do?  I don't know.  We do what we can.  Janey's favorite activity is going for car rides while listening to music.  She adores doing that, and we do it as much as we can.  Tony takes Janey on many, many car rides to nowhere, with mix CD playing.  It's wonderful to see Janey during these rides.  She has strong opinions about music.  She doesn't like everything, but what she does like, she loves.  We put a lot of time into finding her new music she might like, and it's time we all enjoy.  But we can't always ride in the car.  I put a video of Janey on my Facebook companion page (I can't figure out how to put it here, but you can see it there if you want) asking for a car ride last night.  It was one of the rare times Tony had to say no---he was exhausted and the car was covered with snow. After the part shown in the video, Janey frantically paced back and forth asking to put her coat on and go in the car---for an hour, until she went to sleep.  It broke our hearts.

I don't have answers here.  I don't know exactly how this problem can be fixed.  But I must keep trying.  Janey needs a full life.  I owe it to her to find a way to give her one.

800th Post!

Eight hundred posts.  Wow.  That's over eight years, but boy, do I like to write a lot, and ramble on at times, and most of all, have all of you to talk to and share lives with.

I thought, for fun, my own fun anyway, I'd look at each 100th post---the 100th post, the 200ths, etc., and see what they were about.  So here goes!

Post 100---"Crying Day"

Okay, that's not a cheerful one to start with.  It's about a common theme---Janey's crying.  She was 5 and a half then, and I was discouraged, and dissing the Holland story.

Post 200---"Toys"

Another theme I hit on fairly often---how it's hard to find toys for Janey, and what kind of toys she does like.  I think I obsess over this a little, as I did here when she had just turned 7.  I like toys.  I love toys, maybe, and sometimes the hardest things to feel at peace about with autism or I think any special need in a child are the things you looked forward to sharing with them that are never going to happen.  Janey's not going to beg me for an American Girl doll, or the latest Shopkins, or anything like that, and I don't think even now I'm quite resigned to that.

Post 300---"Why is the Crying So Hard?"

Another crying post!  This time, I was trying to figure out why crying in particular is something I get so upset by, and just can't ever ignore.  Janey was seven and a half here.

Post 400---"Another Day, Another Book"

A little different!  I love to read, and I do a lot of book reviewing, and that other life snuck into the blog here, in the form of an autism memoir.  I don't read as many of them as I'd think I would---I think I need a break from autism when I read, most of the time.  But when I do read a book about autism, I usually write a blog post about it.

Post 500---"Good Night, Daddy!"

A cheerful one, for a change, about Janey telling Tony good night totally on her own.  She was eight and a half.  Whenever something like that happened, you can tell on the blog that although I'm trying not to get my hopes up, I'm still hoping it's the start of a big new change.  I guess it's good not to give up that hope, but now I do try to enjoy those little moments on their own, without projecting what they might mean for the future.

Post 600---"Letting Go of Janey's Hand"

Written when Janey was nine, this one is about the baby steps I was taking toward letting Janey walk without holding my hand all the time.  Unlike the talking breakthroughs, this one has lasted.  Janey really doesn't bolt any more, and I feel pretty safe letting her walk without holding her hand, even on the sidewalk of our busy street.  It's nice to read back about when I started doing that!

Post 700---"What it's like to visit a psychiatric hospital"

Well, that's not an uplifting one.  I wrote it last December, when Janey was 10 and was an inpatient at Bradley Hospital in Rhode Island.  I wrote this one partly just for myself, to remember what the visits were like, and partly because I was so unprepared for the whole hospitalization time.  I hoped (and hope) none of you ever have to go through that, or go through it again if you have before, but if sometime in the future you did (and it happens more than I ever realized), I wanted others to have a little bit of an idea what it was like.


And here we are at post 800, sort of a clip show post!  It's been a long, strange last 8 years, the eight years since Janey was diagnosed at age 3.  I can see me writing post 1800 some day in the future.  Autism is lifelong, and I will write about Janey until I am no longer able to.  I hope that is a long time from now.

An Oasis of Wonderful

Janey's mood the last week has been up and down.  If the mood stablizers are working, they are working to overall raise her mood a bit on average, not to really smooth it into a stable mood.  I would certainly say she's been cheerier on average than she was before she started taking the new medication, but the moods are still swinging pretty severely.  We are seeing more patterns.  Janey often wakes up screaming.  This seems to be due to her usually waking up wet and hungry, which are things we can do something about.  She often after that has a very good morning.  As the afternoon wears on, her mood deteriorates a bit, and usually there's a pretty low point about four pm.  She rallies a bit at dinnertime, but gets fussy around five or six.  She's been going to bed extremely early---usually at six or so, and getting up very early too, about four or five am.

Yesterday was Tony's first day at work after a week off.  Janey does not like Tony to be at work at all, especially when she's home from school.  So I tried to keep her busy and on the go.  I needed to drop William off at work at 11.  He works at a Whole Foods which is part of a very upscale outdoor shopping center near here, and I decided to walk around with Janey after dropping him off.  Just the fact I felt I could attempt that is a sign of her improvement over the past few months.

The time at the shopping center was absolutely wonderful.  I saw that without any exceptions.  Janey was a pure, pure joy, and I felt like I was in a dream.

First, we went to a toy store.  Janey looked over the whole store, not getting fixed on any one toy.  She showed lots of curiosity, but was easily redirected to new toys.  She named a lot of toys in delight "A pirate!  A pony!  A whistle!"  Then, we went to an ice cream shop she often sees when riding along to drop off William and always wants to go to.  We don't take her often, as parking is tough and the ice cream place is hugely expensive, but I decided to do it this time as a treat.  She had a scoop of chocolate chip, and ate it in total contentment, sitting by the window and watching people walk by.  Lastly, I went to a store she had no interest in, a paper store, to use the last of my Christmas money to buy a hugely overpriced calendar I'd been craving.  Janey was patient and well behaved the whole time we were in that store.  We headed to the car after that.  I didn't want to push my luck.  I felt like I'd lived through an hour of a miracle.

One thing that kept striking me in the stores was that not only was Janey being so good, she was being better (in my eyes) than other kids around her.  The stores were full of bratty little girls (it just happened to be all girls we saw)  They were begging for everything, whining even while getting all kinds of treats, saying mean things to each other and to their parents---they were being all the things that Janey just isn't.  Janey, as any reader of this blog knows, is far from perfect.  It would be hard for me to argue that any child who attacked a room full of people in an emergency room less than two months ago was perfect.  However, Janey doesn't beg for toys.  She doesn't whine for more treats in stores.  She doesn't say mean things to us.  She was thrilled to be around the toys, without really understanding I could buy them.  She loved her ice cream, without begging for more scoops or more toppings.  She turned several times and looked at me during our walking around as if to say "You are amazing!  What a wonderful time we are having!"  She danced to the music playing over the loudspeaker, danced unself-consciouly with me.  She was in so many ways the child I would have dreamt up, if I were dreaming up my little girl.

At the last store, the paper store, the cashier was taken with Janey and kept saying "She is so beautiful!  What a sweet girl!"  When we were leaving, she said "Goodbye, honey!"  I prompted Janey to say goodbye, and she did.  I fought back an urge to do what I so often do, to tell the cashier Janey is autistic and doesn't talk much.  I fought it back not because I didn't want the cashier to know that, but because I was quite sure she already had seen Janey had special needs.  As Janey gets older, most anyone is going to be able to see she is not typical.  And somehow, I realized at that moment that I don't need to always explain that.  I realized that Janey is special sometimes in ways beyond the special that is part of "special needs"  I realized, that in my eyes anyway, she is special far beyond that.  It didn't matter that the afternoon went seriously downhill after the great morning.  I will treasure the memory of that early in the year shopping trip for a very long time.

Portrait of a great weekend

Janey's moods often seem like the weather.  You can't control them---they come and go as they wish.  This weekend featured sunny, sunny, beautiful weather.  She was a joy.  Tony and I told ourselves this morning to remember how it is when she is like that, to remind us not to lose hope when the storms come.

Here's some moments from this weekend----

Janey woke Saturday with one idea in her head---getting some cupcakes.  Instead of throwing a fit, she just kept charmingly on message, asking for them.  When Tony said something like maybe later they would go to the Stop and Shop and get some, she added that into her request---"want to go to the Stop and Shop?  Want to get cupcakes?"  When Tony was delaying leaving, she went up to him and said "What's going on here?" in a perfect tone for the occasion.  We laughed and laughed, and they set out to get the cupcakes.  Janey only ate the frosting off a couple of them, but that wasn't really the point.

We went for a long "ride in the car", which was another request of Janey's.  She doesn't particularly care where we go during these rides.  She just likes the journey.  We drove around and looked at some  leaves, and then went to the Savers thrift shop.  A few weeks ago, I had gone there with Freddy and Janey, and noticed that suddenly Janey is actually interested in looking at the toys---not just fixating on one or glancing at them, but really looking them over.  I wanted to show Tony the change, and Janey showed him.  She stayed with the toys for a long time, commenting on them "A monkey! A pony!"  She found a huge stuffed snake, which she had to have, and we were glad to get it for her.  On the way home in the car, she sang a clip of a song "When ya going to give me some TIME, Sharona?" and we sang the rest of the song for her.  I felt like crying from happiness at how much fun we were all having.

When we got home, Janey "scared" Freddy with the snake, and then tried scaring the cats with it (mostly by flinging it at them)  Freddy was appropriately scared.  Later, she walked up to him, stood there smiling, and said "I know you!  FREDDY!"  It was an odd and chilling in a good way moment.  A few times lately, I've noticed her looking at people or things like she is really seeing them for the first time.  It was almost like she was saying "I get it now!  You are my brother Freddy!" Of course, she's known who Freddy was always, but it was like it hit her on a new level.  Hard to explain, but amazing to see.

Janey went to sleep at 5 pm last night.  We considered waking her after a bit, worried we were in for an early-awakening night, but she slept until 5 this morning.  She woke up again very happy.  As she sat next to Tony on the couch getting her shoes put on, he said "I'm going to make some coffee you can steal!" and she laughed and laughed and repeated "you can steal coffee!"  She then looked at Tony with the most wonderful smile, and put her head on his shoulder.

I love times like this with Janey.  I wish they would last forever, obviously.  But they don't.  I wish I could feel they would.  I wish I could think "We've turned a corner!  It's going to be easier from here on out!"  Sometimes, I do let myself think that a bit.  But it's a little like thinking the glorious days of fall will never turn into winter.  I don't say this to be negative.  I say it because knowing that perfect fall days won't last forever doesn't make them any less perfect, and because when it's the middle of winter, we can remember that the snap of a crisp fall day will be back.  I want to always remember that.

Sixteen non-sentimental autism truths

No trips to Holland here.  No Hallmark moments.  No miracles.  No breakthroughs.  No shiny rainbow sparkly sentiments.  Just the truth (as I see it)


1.  You can get by on very, very little sleep if you have to.  Coffee helps.

2.  Don't worry too much about what your kids eat.  I can say from experience kids can eat food off the floor, bites of paper towels, duck sauce, pickle juice like a drink and random car crumbs---all in the blink of an eye when you turn your head---and be just fine.

3.  Kids' videos are boring.  Even the better ones are boring after you see them 100 times or so.

4.  You can learn to clean up "toileting accidents", the kind that would make most people sick for days, with barely a thought after doing it for five or six years.

5.  Don't get too attached to any of your kid's clothes.  They will be chewed on, stained up and ruined very soon.

6.  The things you dread the most will often turn out to be the easiest to deal with.  The things you never thought would be a problem will very often become huge disasters.

7.  People like to stare.  They love to look at any child acting odd.  They don't try to hide it.

8.  There will be a point at some time in your life when you will feel like punching someone for talking about their child's C in math or failure to make the elite sports team.

9.  You will argue with your spouse about petty, stupid, meaningless things, and that argument will turn into a screaming match.  You'll do this because you can't argue with your autistic child, and goll dern it, you need to argue.

10.  You will have very little social life as a family.  People don't invite you back when your child screamed for hours last time you visited.

11.  You will look forward to the first day of school like 10 Christmases combined.

12.  You will have daydreams of your child asking for every toy they see at ToyrRUs, because that involves talking and having typical child wants and desires.

13.  You will at one time or another buy something overly expensive (a therapy toy, an app, a supplement, a piece of electronics equipment) because you've read about the wonders it does for autistic kids.  You will wish that money back.

14.  You will eagerly analyze anything in your child's backpack for the slightest hint of what they did all day at school.  No matter how much information your child's teacher gives you, it will not add up to a tenth of what a typical kid tells you about their day, even if the typical kid is a surly teenager.

15.  Birthdays will be tough.  People asking you what grade your child is in will be tough.  Seeing what other kids the same age as your child can do will be tough.  Heck, a lot of things will be tough.

16.  You will delight in accomplishments that most parents wouldn't even notice.  You will be in tears of happiness over words or gestures or smiles that typical parents would take for granted.  You will have moments when you realize that the child you have is perfect.  Those moments will be fleeting, but they will be so very, very sweet.

Low Functioning Autism and Toys

If you are a parent of a child with low-functioning autism, everything I'm going to say here is probably preaching to the choir.  You know what toys work for your child, and although they might not be the same ones I mention here, you know how hard it is to find toys they like.  I'm writing more as a response to quite a few lists I've read in parenting publications, titled something like "10 Great Toys for the Child with Autism!"  Those articles drive me crazy.  They are nearly always aimed at high functioning autism, and they include toys that not only would have absolutely no appeal to a child like Janey, but would sometimes be actually dangerous for her and those like her---things with tiny pieces, things that could be eaten, etc.  They also seem to be aimed at what the child SHOULD learn, not what they would enjoy.  So often, they have suggestions like co-operative games, which would be great as a teaching tool at school, but are generally not at all what the child with LFA like to do for FUN.  And toys should be fun.  So here's my response list, one you might be able to give a relative or friend that wants to get your child a toy they (possibly, no promises!) will enjoy.

1.  Fidget Toys  I could almost end the list right there.  The absolutely most successful kind of toy for Janey, and for a lot of kids like her, is what is called a fidget toy.  It's a toy that can be handled, twisted, fiddled with, pulled on, in general, fidgeted with.  The pictures tell it better than I can.  I love having a box of these around for Janey, to pull out in difficult moments or what we have to wait for a bus or otherwise sit around.  These toys are often sold, strangely, by office supply stores, as a lot of adults like them at their desks.  I don't generally like to mention any specific sites or stores, but I've ordered from these folks at Office Playground  and they have a huge selection of fidget toys and good customer service (they didn't ask me or pay me or even know I'm giving them a shout out!)

2.  Pin Art Toys  I have gotten Janey quite a few of these, and she loves them to death!  They are fascinating to her.

3.  Contained Water Toys  I made up that category title as I don't know a name for this type of toy. Basically, it's a toy with water inside, one you can move around to manipulate the water, which often has drops of dye in it, or waves made from dyed water.

4.  Various Fisher-Price Toddler Toys  And other companies too, of course, but the ones I've found that Janey likes best are by Fisher-Price.  She adores their Roll-Around toys, little balls with things sealed inside to look at and shake.  And one of the biggest hits we've found is a line of toys I don't think they make any more, called Amazing Animals.  They are larger sized hard plastic animals that are jointed, and make a very satisfying clicking sound when moved around.

5.  Musical Toys  This is where I have to be cautious.  Although Janey adores music, often music toys are a little beyond her, and she completely ignores them.  I've gotten all kinds of toy pianos, and she seems to hate them, because she wants her music NOW, and it's a little more than she can do to learn to play them.  I've found she likes toy drums best.  Anyone can drum at a starter level and make an enjoyable sound!  She also SOMETIMES likes toys that play music, but in her case, if the songs are off-key or not sung as she likes, it makes her crazy, so I tend to avoid toys that might do that!

6.  Sensory Blankets  By this, I mean more blanket squares.  These are squares of usually very, very soft fabric, with often tags or other interesting textures sewn in.  They can be held, rubbed, sucked on, used good and hard and then washed.  Janey loves them.

7.  MAYBE Toys  There are a few toys that might be great, but that you would want to check with the parent about first.  They include Play-Doh, bubble stuff and bubble wands and drawing supplies.  You want to make sure the child doesn't eat Play-Doh.  Janey does, very much so.  She loves the stuff, but she loves it like an all-you-can-eat buffet, so we don't get it.  Bubble stuff is great, but again, some kids drink it.  Janey doesn't, but you'd want to check for sure on that one!  And art supplies----Janey has zero interest in drawing, but a lot of kids with autism do like to.  If you get art supplies, keep it simple!  Get paper, markers, crayons---not an elaborate paint set.

DON'T GET  And of course, like with everything I write her, I'm writing from my own experience.  But in general...Don't get things with lots of pieces.  They are going to get lost, or eaten or at the worst choked on.  Don't get games.  Most of the time, kids with LFA don't understand them, and are not entertained by trying to learn them.  Don't get books.  It pains me to say that, because I love books more than anything.  But it's a rare book that really catches on, and most books, especially pretty books you wouldn't want to be ripped up, are just going to sit on shelves.  Don't get videos.  Not that the kids won't love them, because they very well might, but because most kids with LFA already have about a million videos.  Don't get dolls or stuffed animals.  Imaginative play is not the strongest suit for kids with autism.  I do know of several girls that love dolls (I'm think of you, Jamie and Reagan!) but dolls are also pretty easy to find, and another gift would most likely be more appreciated.  And don't get food.  Many of our kids are on special diets.  Recently, we eliminated chocolate from Janey's diet, and I suddenly understand far more than I used to how hard it is when someone brings it into the house!

I imagine this list, strangely, might be one of the more controversial blog posts I've written!  I know I don't speak for everyone.  Please feel free to disagree and add your own suggestions.  But I hope these will help someone trying to buy for the child with LFA that they love!

Ten ideas for all autism organizations out there---what would REALLY help!

The last few days have been, to be frank, awful.  Janey is crying or screaming pretty much every waking moment.  I hope she's been happier at school, but she got off the bus crying today.  She has a good week last week, which ended the minute the weekend started, but I had hoped the weekdays would be good.  They aren't.  I've been feeling fairly depressed.  The other night, trying not to cry, I sat outside and thought.  My first thought was "Nothing would help.  There is nothing that would help" But then I thought more, and thought how wrong that is.  There is several things that would help.  They are things that I can't do alone, but I think they are possible. I thought I'd put them out there, in case anyone from an autism fundraising organization ever by chance reads this.  Here is what someone in the trenches, deep in the trenches, wishes you'd spend money on.

1.  A well-staffed, well-run, free or very low cost respite center.

2.  Emergency help that parents can turn to in a true mental health emergency

3.  A free lending library of developmental and sensory toys suitable for kids with autism.

4.  Specific instructions on best practices in autism parenting, without a biased leaning toward any certain approach.

5.  True year-round schools

6.  Recreational activities for children with autism---not once a year Special Olympics, not the occasional party, but affordable and well-taught lessons and fun---swimming lessons, music lessons, dance lessons, art lessons...

7.  Education for the general public---maybe a series of documentaries in prime time---that shows the FULL range of autism, not some amazing very high functioning handpicked examples

8.  Nights at local restaurants, museums, stores and more for families with autism, where the occasional scream or hand-flap or tantrum will be just part of the jolly background noise

9.  Education for classroom aides, who often wind up doing much of the hands-on care of autistic kids at school.

10.  Research not into causes or prevention, but into TREATMENT---medications, therapies, diets, etc.

That's my list.  Any one of the items would make a different in my life personally, and I think in the lives of many of us out there.  Like most parents, I'm not looking for a handout, not looking for money or special treatment.  I am looking for help that I desperately need to be able to raise my child.  I might write more about each of these wishes in the future, but just listing them for now felt good.  Even if none of them will happen, it's better to know there is something that COULD help.  Let's challenge every autism organization out there to help---to remember we need help that is hands-on, respite-giving and affordable.  Desperately.

Bunker Hill Day

For those of you not familiar with it, Bunker Hill Day is a weird Boston only holiday, in honor of the Battle of Bunker Hill.  Not to dis any Revolutionary War battles, but I can't stand it.  It happens right near the end of the school year, when you are saying to yourself "Only a few days left of school!  I'll take full advantage of them!" and then all of a sudden, you realize one of those days you were counting on is actually a day off.  That was today.

Janey doesn't like days off that come in the middle of the week.  I think they confuse her.  She can tolerate them if Daddy is home, but Daddy was at work.  So it was a long day.  It did, however, follow the recent pattern of very rapidly cycling ups and downs.

I had planned to go to a local pond as soon as we were up and dressed, but Janey was quite content at that point to watch YouTube videos, so I changed plans and let her do that while I had my coffee.  Then Freddy kindly watched her for a bit while I read a little.  Then she freaked out and screamed for a while.  I calmed her down by taking her outside.  We had a pretty good hour or so outside.  I pulled out her big bucket of water toys, filled the bucket with water and let her play.  She loves water.  I would have stayed outside all day, but eventually Janey wanted to go in.  She was then at loose ends.  I tried reading to her, drawing with her, singing with her---none of those interested her.  It's so, so hard to find something she likes to do on a day without real plans.

Finally, it was time to take William to work.  The car ride felt like a treat.  Janey was calm, and I was able to not feel like I had to figure out how to entertain her.  After we dropped off William, I decided to go to ToysRUs.  I've done that a few times with Janey, with varying success.  She really doesn't get it it's a store.  For her, it's kind of a museum of toys.  I like going there with just her, and letting her take all the time she wants to look at whatever she wants.  Today, it was the Disney Princess aisle (yet another in a long list of things I didn't want a daughter to like, but at this point, if Janey is interested in something, I just go with it).  Janey looked at all the different Ariels, her favorite princess.  She didn't say much of anything, but at one point she smiled a huge smile and hugged me, which I took as a sign of her enjoyment.  Eventually I got her to look at a few other things, and she actually picked up a toy---a LaLaLoopy little pony with rubber band type hair.  She carried it around the whole rest of the time we were there, which is hugely rare for her.  We stayed about an hour, just looking at a few aisles.  Then a baby cried.  Janey cries plenty herself, but she has a bit of a double standard about it---nobody else can cry.  She screamed in displeasure, her hugely loud ear-breaking scream, and I decided it was time to go.  I was going to just put down the pony and make a run for it, but I asked her if she wanted to buy it, and she gave me one of her very rare direct answers---"YES!" So I did.

At home, for the next few hours before the magical moment when Tony gets home, Janey alternated between screaming her lungs off and being happy.  No real rhyme or reason I could see was involved.  Finally Freddy and I decided to watch a Star Trek episode, and put it up loud, as we have to when watching anything.  That actually calmed her down, and when Tony got home, things were pretty mellow.

So why did I write all about this somewhat mundane day?  Because it's illustrative of life with Janey.  It's very hard to engage her.  When I can, like with the water toys or the ToysRUs, I am so happy, and so is she.  But other times, I could try everything in my bag of tricks and the result would only be screaming.  I long for lazy summer days where we go to parks and museums and take trips into the city and read books.  But that is not really a realistic plan with Janey.  She is going to go to summer school for a month, something I truly didn't want to do this summer, but today reminds me that the kind of summer I daydream about just doesn't really work with Janey.  Or it does, for short spells, short spells that are completely unpredictable.  And so, tomorrow, back to school.  I am not the mother I pictured myself being, but I guess it's fair to say Janey isn't the child I pictured having, and we both are doing the best we can, most of the time.

The Many Meanings of "Snuggle on Mama's Bed"

When your vocabulary is pretty limited, as Janey's is, words and phrases have to work overtime.  They have many, many meanings.  This is something it's taken me quite a while to get a handle on, especially with Janey's very most used phrase, "snuggle on Mama's bed!"  You'd think that was a pretty straightforward thing to say, that it meant, well, "I want to snuggle with you on your bed, Mama".  However, it rarely means just that.  Let's run through about 5 of the most popular actual meanings!

1.  "I want you to stop doing what you are doing"  This one is most often used when I'm on the computer, which Janey hates.  She'll come over, issue the famous phrase, and that means I'm supposed to get up immediately.  If I do, and I go to my bed to snuggle, she usually ignores me there and goes back to whatever she was doing.  But if I then try to sneak back on the computer, she notices right away and comes over and repeats the phrase, with a lot more vigor and anger.

2.  "I want you to leave me alone"  This meaning is one I've just recently figured out.  It comes up when we are ALREADY snuggling on Mama's bed, or elsewhere.  It means she wants me to go find my own place to snuggle, and leave her alone on the bed.  It often comes up in the middle of the night, when she has decided she doesn't want to sleep in her own bed, but doesn't want us cluttering up OUR bed either.  She wants room.  She wants to be by herself.  Figuring out this one was a breakthrough, as it always confused me very much that she constantly asked to snuggle when she was in the middle of snuggling!

3.  "I am upset and I need comforting"  This one is pretty easy to figure.  If a video isn't what she wanted it to be, or if we are ignoring her urgent requests for bacon or ice cream or the like, she wants to reset the scene and to get some help calming down.

4.  "I want to replay something very specific we did at a past time"  Since we spend so much of our time snuggling on Mama's bed, and since I often try to sneak in a little learning during that time, I often read to Janey on the bed, or pull out a bag of toys (I keep a few near the bed) to spark conversation, or recite nursery rhymes, or sing to her, or whatever I can think of.  There's a big variety.  If one of those activities was something Janey really liked, she will ask to snuggle in order to get me to do that activity again.  The problem is that she expects me to know what one she is thinking of, and doesn't like it at all when I don't.  Sometimes she's give me a few cues, usually by picking up a toy or handing me the book, but other times, she just starts screaming because I have no clue what I am supposed to do.

5.  "I don't know what to say, so I'll just throw out a phrase I DO know how to say"  I think this is a very common use of the snuggle phrase.  It's one of the few phrases Janey says with ease, and when she wants to communicate something but has no idea how, or when she just wants to connect, she'll toss out a snuggle request.  It's familiar, it's easy, and it usually gets SOME kind of response.

I wish there was a way to get Janey to talk with more variety---I wish it with all my heart.  It must be so extremely frustrating to have to rely on so few phrases to say so much.  I don't know how to help her with this effectively.  I often say back to her what I think she REALLY means, trying to give her the words---"Oh, you want to be ALONE on the bed right now!" or "You are upset and need some attention!" but this doesn't seem to lead to her using those phrases herself, although she will look happy I'm getting it.  I know I am very fortunate that Janey talks at all.  Many kids at her level of functioning don't, and I never take her talking for granted.  I love to hear whatever she has to say, but I wish for her that she could better say what she means, or even that we dense adults could better understand her meaning.

Janey's Mysterious Mind and Memory

I wish more than almost anything I could go inside Janey's mind.  I wish I could do a mind meld, like Mr. Spock, and just for a little while, see what her thoughts are like.  It would help so much in making decisions about her.  I try hard to believe in one of the latest catch phrases "assuming competence"---I try hard to assume that Janey understands everything and has a huge amount of untapped potential.  But there are days when it's hard to keep up that belief.  It's hard to understand why, if she does have this potential, her talking doesn't progress, her learning remains for most areas very, very slow, her toilet training seems to have permanently stalled.  And of course highest on my mind lately---why a school full of people doing their absolute best for Janey for seven years have not been able to teach her enough for it to seem like the right thing to keep her there.

A few things happened this past weekend that made me realize how mysterious Janey's mind is.  One involved a popular toy---a Pillow Pets Dream Lites stuffed toy.  About two years ago, we saw an ad on TV for these pillow animals that light up and put stars of light onto the ceiling.  Janey, in a hugely rare moment for her, said "I want that"  I really have no idea why I didn't get her one.  I guess it seemed like a very expensive and somewhat silly toy, but I can count on one hand and have fingers left over how many times Janey has actually asked for a toy.  I should have eagerly grabbed the phone to order one.  Maybe we were feeling extra pinched for money, or something---I don't remember.  However, this past weekend, I saw a Dream Lite dog at my favorite thrift store, still in great condition, lighting all up.  I asked Janey if she wanted it.  She was half asleep and not in a talking mood, but she gave a half nod, so I tossed it in the cart.  When we got in the car, Janey suddenly said something I didn't understand at first, but recognized as an unusual original sentence.  I asked her to repeat it, and she actually did---"I want my toy!".  Wow.  Tony went through the bags and found the pillow dog right away.  Janey spent the car ride home pushing the button to turn on and off the lights.  Since then, she has kept the toy close.  She isn't fanatically in love with it, but it's obvious she has more interest in it than almost any other toy she has.  And I keep thinking---she really did see something she wanted, years ago, asked for it, saw it again and remembered it, and made the effort again to make sure she had it with her.  There are times that would seem out of her reach.  It's re-taught me something I keep having to learn.  If a child that almost never asks for any toy asks for one all of a sudden, just get it!

Janey was overall in a grumpy, sleepy mood last weekend.  I hadn't seen her smile in days.  And then her brother William came home for a surprise afternoon visit from college, and Janey was obviously thrilled.  She smiled nonstop for the rest of the day.  It's not like she rushed over to him and hugged him---she doesn't provide the kind of reactions that are that easy to read.  But in her own way, seeing him meant a huge amount to her.  I wonder if she often dwells on where exactly he is.  She's seen his room at college, we've talked to her about where he is a lot, but I think still she doesn't get it.  He suddenly went from being here to not being here, and seeing him again must be a huge relief to her.  It teaches me another of those lessons I need to be reminded of over and over---we have no idea what is really worrying her or upsetting her.

Janey's mind doesn't yield easily to analysis.  The clues to her thoughts, her worries, her wants and needs---they are subtle.  But when I work on understanding her, I do think it's true that there is so much more there than it would seem at first glance.  It's going to be my life's task to try to understand her.

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.

Sally Cat and Regression

Sally Cat showed up today.  She does, now and then, I guess when I am in need of a good cry.  She is a pink stuffed cat that meows when you push on her.  She was bought when Janey was 2, on a trip to the Gap.  Janey asked for her, and although she needed a new stuffed animal not at all, I could tell it would be a battle not to get her, so I gave in.  One of the many things about Sally that makes me cry is that that was probably the last time Janey ever asked for a toy in a store.  I wish I had bought her with enthusiasm.

Janey loved Sally, for a brief period---probably about four months.  She named her herself, when I asked her the name.  I don't know where she came up with Sally, but at the time, I didn't wonder that much, as you know two year old---going through that language explosion and saying all kinds of things.  We took Sally everywhere we went, and she was part of the family, as kids that age get with a favorite toy animal.  Then came the summer of 2007, and the horrible regression.  By the end of the summer, Janey no longer had any interest in Sally.  She couldn't say her name, or much of anything else.

I showed Sally to Janey today, and kind of hoped for a miracle.  I don't do that a lot.  And I didn't get one.  Janey did her not-look looking at her and tossed her aside.  I said "This is Sally!  You used to love Sally!"  No answer, no recognition that she had heard me.  Par for the course.

I don't think much about Janey's first 3 years.  I can't.  I just can't.  If I do, it's too hard.  I tend to remember only the early signs something was wrong, and not the little girl who talked well, when she wanted to.  I think, though, sometimes, about the last visit from the PT who saw Janey in Early Intervention, before they discharged her, saying she no longer needed services.  The PT was great.  She said "Please always stay in touch with me.  Janey is so bright and talks so much!  I can't wait to see how she does at school!"  I never called her.  I never could bring myself to.  I didn't want to see or hear her shock.  It's easier sometimes to pretend that Janey never existed.  It makes acceptance easier, and I do accept Janey as she is now.  Of course, she is the same person she was then, but sometimes, somehow, it's easier to almost pretend she isn't.  I have heard that the notion of changelings might come from autistic kids in the past that regressed, and I can see why.  It's like someone came and took one Janey and replaced her with another, identical looking Janey.

But I won't write about that any more right now.  Even writing about it is too hard.  I put Sally away, where I won't see her for a while.  I would never get rid of her.  She's a keepsake of a time that I do accept isn't coming back.  Sometimes, when I see parents in stores exasperated at their kids for asking for every toy they see, I almost want to tell them the story of Sally, and tell them---buy the toys.  Buy them, because you never know.

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.

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.

The storm and the screaming

We are in the middle of what the weather people keep reminding us is an historic storm here in the Boston area.  I was skeptical, but yes indeed, it's pretty bad looking out there, and they keep saying it's going to get a lot worse.  Driving has been banned, and it's a little cool looking at the major road we live on almost empty---like a tiny taste of living on a back road for just tonight.  I'm able to enjoy the view and the storm because Tony made it home.  He was away all week, and had to fly back into Boston today, which was a very, very iffy proposition.  He got an earlier flight than he planned, and made it home around 1 pm.  I was thrilled to see him.  Janey didn't have an extra bad week, but being a single parent even for a week of the three kids---it's more than I can do.  Or I shouldn't say that, because if I had to do it, I'd do it.  I'm being just like the "I don't know how you do it" people.  But I'm glad I don't have to do it.  It's very hard.  I don't get a break in the night when she wakes, I don't have some to ask to watch her for a while so I can rest or work, I don't have someone to laugh instead of cry with, I don't have a co-worker in the incredibly tough job that is Janey parenting.

Janey missed Tony.  It's hard to say how she feels, exactly, about him being gone, but I tried to prepare her, and then, throughout the week, remind her as I picked her up at school that he was "gone on an airplane trip, but Daddy will come back"  I made up a few songs, and repeated the basic message as much as I could---Daddy is gone for a while, but he will come back.  Today, when I knew he'd be home in just a few minutes, I told her "Guess who is coming home from their airplane trip?" and she said "Is it Daddy?"  I was thrilled with that.  I haven't heard her ask that kind of question before.

She was very happy to see Daddy, but within a few hours was screaming more than she had for a while.  I'm guessing it's a few things combined.  The weather is weird, and she must see that.  She was excited to the point of overexcited to be with Tony, and that can turn fairly quickly into overwhelmed screaming with her.  She also probably expected them to go out someplace right away, as they often do---an exciting trip to the store or something---and we are banned by law from going anyplace right now!  A little part of it might have had nothing to do with Tony.  She was playing for the first time in a while with the talking robot doll I got her for Christmas, and the doll, Serefina, says "If you're there, SAY SOMETHING!" which she kept repeating.  I asked her if that was scaring her, and told her we could put the doll away, and it might have been coincidence, but that seemed to calm her down.  I don't know if she totally gets that the doll isn't alive, and by coincidence, she's been watching Toy Story lately, which could possible put the idea of living toys in her head.  Who knows?  It's like a complex guessing game or mystery figuring out what is in her head, and one that has no answer key, so I never know for sure if I get it right.

We'll be riding out the storm for a few days here.  I hope we get through it without too much insanity.  I'm very thankful we're all together and warm and have enough food to last us.  Hope anyone else in the path of this winter monster does too!

Mouthing

Janey puts everything in her mouth.  This is a behavior that hasn't gotten a bit better over time.  Lately, it seems worse.  If she gets a new toy or stuffed animal, the absolute first way she explores it is by putting it in her mouth.  Researching this, I found most toddlers stop the mouthing by around age 2.  That's why there's usually a 3 and under choking warning on small toys---because by age 3, the mouthing is not as much of a problem.  Of course, Janey lives in a 3 and older world.  It would be literally impossible to keep every single small item out of her reach.  She couldn't go to school, the boys couldn't have things they need for school, heck, even clothes for an 8 year old have small parts.  Knock on wood, Janey haven't ever choked on anything, and she doesn't seem very inclined to swallow what goes in her mouth, except food.  She does like to chew on things like pieces of plastic or pieces of paper, when I'm not looking, but she's also good about taking out what is in her mouth as soon as I ask her.  Still, it's a big problem.  It's one of the reasons I always have to stay alert and keep an eye on her, just in case.  And although we've been very lucky so far, that is no guarantee that someday she might have a choking issue.

I looked for theories as to why kids with autism sometimes are mouthers.  One idea is that the mouth is hyposensitive---under sensitive, and they are seeking out sensation.  That makes a little sense.  Janey does like hot foods and spicy foods, and she will eat things with textures most kids avoid.  Another thought is it's just a very delayed developmental stage.  Janey is at a toddler stage in a lot of ways, so I guess that could be it.  I think it might have something to do with her teeth, too.  She's losing teeth here and there, and I know that can make your mouth feel odd---a little different every day---and she might be wanting to explore the new tooth arrangement often.  It also might just be a habit.

Usually, the mouthing is not actually eating non-food substances, not actually pica.  But occasionally Janey will try to eat paper.  I can relate to this a little.  As a girl, I was drawn to eating paper long enough that I can remember doing so.  Unlike Janey, I knew I wasn't supposed to, and hid doing it.  I can remember it being a texture thing---the paper just felt good to chew.  It's kind of cool in an odd way to be able to relate in that way to one of Janey's odd behaviors, even while I am telling her firmly to spit out that wad of paper.  I still am hugely drawn to chewing ice, even though I know it's awful for the teeth.  I know that, but still, I can't help wanting to crack that ice with my teeth.  I try to use that in dealing with Janey and mouthing.  I'm not going to try to get her to never put things in her mouth.  It's more I want her to have a lot of safe things around to put in her mouth.  I buy big bags of baby toys at the thrift store I go to, and wash them in hot water.  There's always a baby toy around, and when Janey starts mouthing inappropriate things, I try to hand her a baby toy to chew.  I resisted doing this until a year or so ago, hung up on the "age appropriate" bit, but now, I don't care.  I care about developmental appropriateness, if that's a thing!  Hopefully, someday, the mouthing will end.  For now, it's another challenge in making the world as Janey-safe as I can.

Evaluating Janey

I'm taking a break from my series about all the possible ways Janey became autistic to write about yesterday.  We had a meeting with what our health plan calls Developmental Consultation Services.  In essence, it was a meeting with a developmental pediatrician.  We had sent her a lot of information about Janey---old IEPs and other evaluations, medical records, etc, and I filled out lots of forms about her.  I had talked to a social worker on the phone about what I felt I most wanted from the service.  I told them I wanted an accurate read on Janey's measurable intelligence.  I feel like that's something I haven't been able to get.  I know she has scattered skills, highs and lows, but I'd like to know where she stands based on regular testing, because I'd like to get an idea of what she is capable of, so I can best plan what kind of education would be best for her.  I don't want her spending years and years trying to learn letters or shapes or colors she can't learn, while she could be learning more practical things, or enjoying the things in life she IS good at.  The doctor was very nice and competent seeming, but explained that she wasn't fully qualified to do testing like that, but she'd do a little testing to help me get an idea.  She did two types of tests with Janey---one where Janey had to point at one of four pictures to answer questions, like "Which bowl is full?" or "Which animal is big?" or "Where the triangle?"  The other was a test of skills like building a block tower or stringing beads.

Janey co-operated fairly well for the first part.  She was engaged, she echoed everything that was asked and she pointed to a picture in every case---not always really trying, I don't think, but doing what she thought she was being asked to.  She did better in some parts that I would have guessed, but not as well in other parts.  I have no idea how it will be scored (we go back in 2 weeks to hear about that) but it was interesting to watch.  She was less engaged by the part that required fine motor skills, which surprised the tester.  She noticed that Janey is more verbally oriented than you would guess for a girl that doesn't talk much, and remarked that is a bit unusual for an autistic child.  It's the whole "She's supposed to think in pictures, but she thinks in words" bit.

A few things bugged me.  One was that the testing book they used for the first part was spiral bound, and the spiral was half off the binding, creating an enticing Slinky-looking toy in Janey's eyes.  She couldn't keep her hands off it, and that interfered with the testing.  I can't understand why someone that tests autistic kids wouldn't realize that would be a problem and fix it.  It wasted time and Janey's attention constantly reminding her not to touch it.  Another was the stupid toys in the office, that were supposed to engage Janey while we talked.  They were not suitable for kids with special needs.  How hard would it be to get babyproof type toys for the toy box, since you are going to be dealing with kids that probably mouth toys?   But that's just a little blog ranting!

In talking to the pediatrician, I got the feeling she was not a huge fan of inclusion or of Janey's school, which she has visited.  She said she felt often that separate classrooms better served kids like Janey, with significant needs.  That is something that might be true from a strictly academic viewpoint, and I tried to explain to her that that is one of the reasons I want to know what Janey is capable of.  Truthfully, regardless of that, I would not move Janey to another school for almost any reason.  It's partly for the same reason I picked schools for my boys, but even more so for Janey.  Janey is happy at school.  She is loved there.  Although I know that with autism, there is supposed to be a sense of urgency about the early years, and I shouldn't think this way, but I think the main goal of elementary school is to have kids learn to be around people, learn to trust adults, learn to interact with others, and start, just start, learning academics.  There is a lifetime for serious work, and believe me, once kids ("regular" kids like the boys) are in high school, there is PLENTY of hard work, far more than I ever had.  For someone like Janey, who is not going to have a career, barring miracles, I find it even less important that she be learning as much as possible every moment.  I am going to start worrying more about that when she is in 6th grade or so.

The other reason I'd not consider a change is how Janey reacted to missing a day of school, which she hardly ever does.  She DID NOT take it well.  Last night was the worst night in probably 2 years.  She was hysterical, completely overcome with screaming and crying and fury.  She woke at 3, still very upset.  She understood---William and Freddy are at school, but I'm not.  I of course tried to prepare her, to talk to her, but her worry and fury is not verbalized or able to be helped by talk.  It's the routine.  For all she knows, we are never going to school again when we don't go for a day.  And that is NOT RIGHT, in her eyes.  I'm going to try hard not to ever schedule an appointment during a school day again.

Overall, yesterday did something interesting for me.  It made me realize I am getting more confident about my knowledge of Janey and my vision of what I want her world to be like.  I'm able to say more definitively what I want for her and don't want.  I am less swayed by "experts", even kind and knowledgable experts like the doctor yesterday.  It was an interesting day in that way.

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.