Yes, no, the water---talking and not talking

One of the oddities of Janey's speech is that there rarely seems to be a time when she is using both "yes" and "no".  She'll use only "yes" for a long time, then only "no", then swing back---the idea of having both as an option seems to elude her, or seemed to.  Lately, we are hearing both, and it's wonderful.  "Yes" is still far more common than "no", but there are "no"s now and then.  Janey's teacher told me about one, realizing they are fairly rare.  He asked her to carry a communication sheet to breakfast with her, and she said no.  He was surprised and pleased, and respected the no.

It's interesting to me that what she refused was a communication aide.  It reminded me of a time when I talked to Janey about ways besides speaking she could use to communicate.  That led to one of the most striking and surprising moments ever with her.  I wrote about it here. (link)  Janey told me, clearly and firmly, "I know how to talk".  She said it twice, in a way she very rarely speaks.  That, and many other times she has refused very strongly to use AAC or iPad speech programs or anything of the like, has given me her strong opinion.  I love to know how she feels about issues, and I respect her opinions.  But I do wish I could help her better use her talking to communicate.

Here's an example.  Janey loves to take showers.  Our shower is jury-rigged in such a way that only the cold water works to change the water temperature.  You have to turn the cold water faucet in tiny increments to get the water hotter or colder.  We have it set on the hot water heater so it's never dangerously hot, but it can get fairly hot.  Janey likes the shower almost, but not quite, as hot as it goes.  She has seen from observing how I adjust the temperature.  Since she will often want a shower that's half an hour or more, I get out after washing her hair and just supervise.  While she's in there alone, she constantly tries to fix the water to be just the temperature she wants, and she constantly overfixes it.

When the water gets too hot or too cold, Janey says, every time, "Want to get out?"  And so I hold out a hand to get her out.  And she refuses.  And then I ask "Do you want me to fix the water?" and she repeats that in confirmation---"Do you want me to fix the water!"  And I do.  And then a minute---again.  And again....  The other day, I figured while I was standing around waiting for her to ask for help, I might as well try an experiment in getting her to say what she meant.  I said to her "Janey, you always ask to get out when you mean you want me to fix the water.  When you want the water fixed, can you say 'Mama, fix the water?' or something like that instead?"  Minutes later, of course, "want to get out" And so I played dumb and tried to get her out.  When she didn't get out, I pretended I didn't know what she wanted, and finally, she said "fix the water!"  And for the rest of that shower, she said it.

So---a breakthrough, right?  Wrong.  The next day, we were back to square one, asking to get out.  I reminded her, but this time, she just screamed and screamed.  I finally made her get out.  The next day, she cried before even getting in the shower, and didn't ask for the water to be changed---just stood there in water that had gotten too cold.  In the days since the first try, over the course of about maybe 20 showers, she has once said on her own "fix the water!" Now, when she asks to get out, I just say "You want me to fix the water" and do it.  When she's ready to get out, she gets out without asking.  In her eyes, problem solved.

That's a long example of a problem that comes up over and over.  It's extremely, extremely hard to get Janey to regularly use any new speech.  She KNOWS the words, she CAN say, she UNDERSTANDS them, but she doesn't use them.  She uses a few phrases for almost all purposes. Years and years and years of school speech therapy have not helped to talk more at all.  They have been, I can say pretty strongly, a complete failure in that department.

I don't know what to do about this issue.  I'd be thrilled to communicate with Janey in any way.  If she would use a speech program, or sign language, or typing, or writing, or anything, I'd move heaven and earth to work with her.  But she doesn't want to.  If I could find a kind of speech therapy that worked for her specific speech issues, I'd drive anywhere, pay anything (although our insurance would most likely cover it, IF I could find it) to make use of it.  But I've never had anyone seem to know how to help her use her verbal speech more.

So, for now, we accept what she can say. The shower talk attempt taught me something.  If I know what she means, I will go with that.  It does little good and sometimes much harm to try to force her to speak in a way that more people could understand.  It's more important for me to connect with her than to try to change her way of talking.  Still---there is the bigger world.  There's the thought of her without Tony and me, someday, the black hole, the staring at the sun, the thing we can't think about but which always is there in our minds anyway.  I hope she always finds someone to understand her, and I wish so much I could help her make that possible.

How is Janey doing?

A lot of people have been asking me that question---how is Janey doing at home?  How is her recovery?

Well, it's slow but steady.  She is eating much better than she was, is drinking a good amount, her digestive system seems to be working well based on pullups, she doesn't seem to be in pain most of the time.  She hasn't had any fevers or signs of infection.  Those are all good things!

However, she is still what the surgeon told us to expect, "debilitated".  At the time, it struck me as an unusual word to use.  It sounded more severe than anything I pictured.  But it's actually a very accurate word.  Janey really is debilitated.  She still needs a huge amount of rest.  She spends a lot of the day lying down in bed.  She gets very tired after walking.  She walks hunched over most of the time.  She looks thin and pale.  She looks like what she is, someone who was seriously ill and in the hospital for a long time.

We are taking her out a little at a time.  This afternoon, we took her along when taking her brother William to work at Whole Foods, and took her in the store for a few minutes.  She usually likes Whole Foods a lot, but this time, she got extremely worn out quickly.  I wound up taking her back to the car while Tony checked out.  It's probably lucky that I've gotten used to getting stares over the years due to Janey's behavior, as we got stares.  Not because of her behavior, which was very quiet, but because of the careful and hunched way she was walking, and the fact we had to stop and rest a few times on the way to the car.  They are different kinds of stares than I am used to.  The behavior stares are more curious, more stealthy and sometimes a bit judgey.  These stares look concerned, unsettled.  I don't like either kind much, but I can understand these a bit.

Janey's behavior?  It is not back to normal, but there are shades of it.  She gets very upset when we tell her no, which we are not having to do a lot of---she isn't asking for much.  But when we have to say no, she screams quickly and loudly, intensely, and then it's over, like she knows she won't have the energy to cry for long.  She is biting her arm when she's upset, but she hasn't been aggressive to others at all lately, save one slap to my face a few days ago.  Mostly, she's like a tired version of her old self.  There is no jumping up and down, no running around, no climbing things to get what she wants.  She is watching a great deal of YouTube on her iPad, like in the hospital.

An interesting thing I've noticed is that Janey seems to appreciate little things I don't think she ever noticed much before.  When we first got home, and she was on her own bed, with her own blankets, she smiled the hugest smile you can imagine.  We were all gathered around, and it was a wonderful moment.  I can imagine that despite us trying to explain otherwise to her, she might have not been sure if she had permanently moved to the hospital, and she seemed thrilled that was not the case.  When she asks me to lie with her on the bed, and I do, she has been smiling at me with the sweetest, most loving smile I've ever seen.  She often wanted me to lie with her in the hospital, and there just wasn't room, and I think she loves it than now we can do that.

I can't imagine what has gone on in Janey's mind about this whole ordeal.  I've tried to explain it to her, and she can say "appendix", but I don't think she understands much at all.  To her, it must have felt like some odd kind of arbitrary torture at times.  I keep thinking of the times when she couldn't have anything by mouth, even water.  She would ask over and over and over "Water?  Water, please!  Water!" and we would have to say no.  It killed me to say no to that---one of the basic things a mother does for a child.  I am sure she had no idea why she suddenly had to be thirsty.  Then, when she wasn't drinking enough, we kept urging water on her, and she didn't want it.  She must have thought we'd gone some strange kind of crazy, or become suddenly cruel.  It is so hard to think about that.

I hope Janey is well enough to go to summer school when it starts.  I think she will be.  It's a slow road, though, and it's made harder by her autism.  I can't explain why she needs to try to stand up straight, or why her stomach might still feel weird, or why in fact any of the past month has happened.  But she is a strong girl, and I know there will be a day when this is completely behind us.  I am looking forward to that day.

Janey in Maine---a tale of little sleep

Janey and I spent the last five days in Maine, where I am from.  We stayed with my parents.  I wanted very much to visit Maine for a little longer than my usual 2 or 3 day trip this summer, and I wanted Janey to get try some of the things that made summer special for me growing up.  So I decided to give it a try, just the two of us.  William is off to college and Freddy and Tony had to work.

How did it go?  Well----it was a mixed bag.  My parents did what they could to help, and I was glad Janey had time with them.  We did a lot of things---we went to a fair with lots of animals, we visited Pemaquid Point, which is a rocky seashore, my dear friend took us to have her mother meet Janey and to her camp, where Janey got to sit on a boat, as well as to an alpaca farm, and Janey got to run around outside a lot.  I put pictures on my Facebook page, and here is one of Janey on the rocks---I loved seeing her play on them, as that is what I did all summer long growing up.  But...it was tough.  Janey slept very, very poorly up there.  It was quiet, we had a nice bed in my parents' travel trailer, our own little place, she got plenty of exercise, but she didn't sleep.  And when she got overwhelmed, she screamed.

The sleep was so tough.  My parents watched Janey in the afternoons so I could have a nap, but nothing really makes up for a night with only 2 or 3 hours sleep.  I don't get to sleep quickly, especially when I am thinking I'm going to be awakened, so once I did go to bed, I lay there for a while, finally drifted off, and it would feel like a few moments rest and BAM---Janey was awake.  One night I tried waiting a while when she started crying to go to her, and she said in a very sad voice "I sprang to my feet to see what was the matter!" a quote from The Night Before Christmas and a pointed jab at me and what I was supposed to do when she woke up.  Generally, she was cheerful in the night, but not sleepy.  She walked around, recited things, poked me and just plain stayed up, usually from 2 am on.  My husband Tony and I trade off night duties at home, and Janey usually sleeps better than that.  She was in a place she wasn't used to, she didn't have Daddy around or familiar things to comfort her when she woke up---I can understand the not sleeping.  But I felt like a zombie in the daytime.

And the screaming...The screaming hasn't been as bad as it used to be most of this summer.  It's been a good summer.  And a lot of the time in Maine, Janey was fairly happy.  But when she broke down, it was badly.  At one point, when my parents were letting me nap and my father was taking a walk down their dirt road with Janey, she woke me up with her screaming, from quite a bit down the road and through the walls of the camper I was sleeping in.  I worried the neighbors, who don't know Janey, would think something horrible was going on.  My father did his level best with her, but when she is like that, it's almost impossible to calm her.  I went and got her and lay down with her, and finally, she calmed.  For a bit.  There were a few other incidents like this, always it seemed right at a time when I desperately wanted her to be happy, like when she met my friend's mother.

I'm glad I took the trip.  It was a big deal to me to be able to do it.  I have never taken Janey away from home for even one night on my own, and she has never stayed at anyone's house for more than a night.  Her having such success at camp gave me the courage to try it.  It was real life, not a camp where everything is geared people with special needs, and I need to keep that in mind.  She did the best she could, and we made it home in one piece, and she got to experience a lot of things she wouldn't have otherwise, and we both got time with my parents.  I'm going to catch up on my sleep the next few days, thanks to a rested Tony.  And school starts Thursday.  Or, as I should put it SCHOOL STARTS THURSDAY!!!!!

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!

Dread at Vacation's End

Tony had a week's vacation, starting on the 4th of July.  He goes back to work tomorrow.  I am feeling dread at the thought.  It's been so good having him home.  Taking care of Janey is a two person job, often, because no one person can do it for long alone.  When she doesn't sleep, whoever stays up with her desperately needs to sleep the next day.  When she screams for hours, we need to tag team, because if one person alone cares for her, it becomes overwhelming in the extreme.  Even when she is happy and cheerful, she needs two sets of eyes, because if one person needs to do something like go to the bathroom or fix lunch, the other person needs to be watching Janey to make sure she doesn't try to get out the door, or try to eat some non-food item, or try to bite herself or her brothers or the cats or whatever.  Of course, sometimes we do have to care for Janey one on one, and we do it, because we have to.  But after having 10 days in a row of Tony home, I'm dreading the solo shift.

Luckily, Janey is going to summer school, so if she doesn't sleep, I can catch a nap once she goes to school.  Summer school got off to a very good start last week in most ways.  Janey cheered up to an amazing extent after her first day Monday.  She likes going to school---she needs that routine, that structure.  She stayed cheery and enthusiastic all week, until, like clockwork, Friday afternoon.  Then she started the screaming and biting again.

My dread is mixed with frustration at myself.  I feel like every year, I have less energy and drive.  I've been worn down.  As Janey gets older and tougher to handle, I get more easily discouraged.  Yesterday was a good example.  I was taking Freddy to a friend's house, with Janey in the car, and I tried to get myself to take her to a nearby splash park.  I just couldn't do it.  I couldn't make myself do it.  The last time we went there,  Janey was stared at constantly.  She was much bigger than the other kids, she was talking to herself, and occasionally she took a notion to go sit on the lap of another mother that caught her eye.  At one point, a little boy, after trying to engage her in play, used the "r" word about her.  Janey didn't hear, or if she did, didn't understand, but I did.  I told myself yesterday to ignore all that, to be tougher, to just make myself go anyway.  But then my mind started thinking about if Janey screamed there, if she tried to bite another child, if she ran away from me, and I just couldn't do it.

Lest I sound like a sad sack, there have been some nice moments with Janey lately, to be sure.  Yesterday she said "You want to read a book!" meaning she wanted me to read her a book.  She wasn't holding a particular book---she just wanted to be read to.  That made me very, very happy.  She is enjoying being read to so much more than ever before.  The smile on her face each day she got off the bus last week was a beautiful thing.  On Thursday, Tony and I went alone to a zoo we like, and had William get Janey off the bus, and his report on how she did was overwhelmingly positive.  When she is happy, everyone's happy.  When she's not happy, ain't nobody happy, as the saying goes.  So we continue our quest without end to figure out how to keep her happy.

Three days of summer down

I don't like summer.  I've never liked summer, although growing up in Maine, I couldn't totally hate it, as a Maine summer is the most glorious thing there is.  But a Boston summer?  You don't often hear that praised, and for good reason.  Summer here tends to be muggy, almost every day.  Boston feels like a place you get away from in the summer, if you can.  But with Janey, we usually can't.  Summer feels endless to me, every year.  I feel like I just survive until September.

I try every year to have a better attitude about summer.  When it's not actually summer yet, I plan in my mind how this year is going to be different.  I will take Janey some great outdoor places, early in the day before it gets too hot.  I'll take her great indoor places in the afternoon.  I will think of activities she might like at home.  I will try to do workbooks with her.  We will play with water a lot.  I will spend long days just being with her, doing whatever makes her happy.

Well, it worked for Monday, the first day of what I see as summer---a day without school where Tony is at work.  Monday was a great day.  Janey was cheerful all day.  We were outside a lot, playing with a bucket of water toys.  When we were inside, I did as she wanted me to do---we did a lot of snuggling, she watched a reasonable amount of videos, and we actually read about 10 books.  That is new, that Janey will have enough interest in books to sit and listen to them, and often want them read again.  We went to the drug store, and Janey actually asked me before we left for a shovel "Want shovel?" and then when I asked her to repeat it, thinking I might be confused, she said "Want to shovel some things?" and made a shoveling motion.  Of course I got her a pail and shovel beach set.  Later in the day my friend Maryellen came over, and her daughter Julia.  Janey said "Julia" for the first time in many, many years, and talked a lot to both of them, and was just a delight.  I kept thinking that night that maybe we had turned a corner.  Maybe things would be easier from now on.

Then Tuesday.  A day from hell.  Janey woke up cranky, and then I had to drag her with me to take William to work, which she objected to by screaming the whole way there and back.  And she pretty much screamed the rest of the day.  I tried all the same things that had worked so well on Monday, but Tuesday was no Monday.  By about 2:30 I was feeling completely overwhelmed.  I actually asked Tony to come home a little early, something I haven't done in a long, long time, because I was at the end of my rope.  Freddy was holding a party for 20 of his most intimate friends on our 3rd floor, so I couldn't leave the house with Janey, even if I would have thought of attempting that with her in that state.  Of course, when Tony got home, a little early, Janey was having a rare calm moment in the back yard, and she was much better all night with him home.

It's possible that Janey realized on Tuesday---"Hey, this is the second day with no school and no Daddy.  This could be the start of a whole stretch of days like that.  I am not going to like this"  So this morning, I did my monologue talk to her about summer.  I explained that summer is when Janey doesn't have school (I didn't get into summer school just then) but Daddy still has to go to work (and I didn't get into the two separate weeks he is taking off), but that he still comes home at night.  I told her William and Freddy are sometimes at work in the summer and sometimes home, but that Mama is home with Janey always (to which I bet she was thinking "wow, how did I ever get THAT lucky" in a sarcastic way).  We were snuggling on the bed as I talked, and at the end, I said "it's like right now.  Mama is right here..." and she jumped in "next to Janey!" which made me think she was listening.

I then tried to make today as much like a Daddy day as I could.  Tony spends a big amount of the day cooking with Janey.  It's something they both enjoy.  So I went out while the boys watched Janey and got ingredients for two fairly complicated recipes, and I spent a lot of time in the kitchen, talking to Janey about what I was doing and having her "help" when she could.  The day was better than Tuesday but not as good as Monday.  There were certainly some screams, but overall, I didn't end the day feeling desperate.

I still think, in a small way, that things are turning, are getting better.  I have to believe that.  Janey's screaming moods don't last as long as they did, and she just seems more connected.  I loved the reading, and I loved her asking for the shovel.  I guess part of the problems is that I tend to be very influenced by the here and now with her, not the big picture.  It's hard to live in a big picture mode with a child that is so very in the moment.  When Janey screams, it's hard to think "well, at least it will probably not be for days".  But luckily, I guess, when she is precious and engaged and happy, it's hard to picture just how tough it can get.  Maybe that is a gift that being an autism parent brings after a while---short-sightedness.  It's like how mothers forget childbirth or the very early non-sleeping days with a baby.  You have to forget it, or you would never have a second child, to say nothing of a third or more.  I have to live in each day with Janey, because looking at all the days to come for the rest of my life (and the days she will live when I am gone) is too much, too overwhelming.

So here's hoping for a summer that is much more like Monday than Tuesday.  But I'd settle for Wednesday.

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.

Respite Day

Janey went today to a respite program from 10-4, during which time they took the kids to the Children's Museum.  I was very, very nervous about sending Janey, but it appears the day went well.  I talked to Janey a lot about where she was going, and we had visited the respite house recently, so I think she did remember.  She woke up in a great mood, and was eager to go, and looked very excited when we got there.  We stayed about 20 minutes, to make sure she was settled and to talk to a few people there about her being a runner, and the arm biting.  Then we kissed her goodbye and took off.  When we picked her up at 4, she was still looking super happy, and we were told she had a great day, and only got upset and arm biting once in the van, and they put on a video and she was happy again.  She wouldn't eat her lunch, but she never eats much except at home.  So, overall I'd say the day was a success!

The respite house has Saturday programs 3 out of the 4 Saturdays in each month, but a lot of them are not ones I'd send Janey to, because I don't think she'd get much out of them or I don't feel comfortable with them.  For example, next week they are going to a water park.  I can't quite picture Janey at a water park---the risks if she ran off are just too much, and I am not a fan of water parks in general.  The chlorine in the water can be a huge trigger for asthma.  Janey doesn't have asthma, but Freddy does, and his worst attack was after a day at a water park.  He was in the hospital for 3 days.  I decided after that we won't be water parking again!  There's a vacation week camp too, for when summertime school ends, but a few of those days are boat tours, another thing I'm not sure I'm ready for Janey to do without me!  But I'll be thrilled if she can go to the program once every few months or so.  That's probably all we can really afford, and it will give her a fun day and us a little rest.

It was strange here without her!  We all realized she's the center of our lives.  It felt kind of empty without her, although I think we could get used to just a tiny bit more time with just the boys now and then!  But today, the boys had a big fight, which is not really like them, and we all were a little cranky.  And I got sick---a sudden weird sickness with a high fever.  The fever is less now, but it was bizarre. So I spend most of the day, and the evening, in bed.  I've read other people say that once they finally got a little break from a child with special needs, they really missed the child, and even though Janey was gone a shorter time than a school day, having the rest of us home made it feel odd.  Maybe part of that is we try very hard not to sound upset or even impassioned around Janey, as she gets upset if she thinks we are upset, even if we are not, just loud and emphatic!  So without her here, we let out some long held in tension.

I'm glad I tried the respite.  I know I'll do it again.  I have a few concerns, such as the staff seeming a little disorganized (although very sweet and good with the kids) and not being sure who was in charge, and there being no sign-in sheet, but the most important thing about respite is that they keep Janey safe and happy, and that seemed to be the case!

Summertime School and not "using your words"

I've always disliked the phrase that people often say to kids "Use your words!"  I know the intent---to remind kids that when they are angry, they need to express verbally what's bothering them---but long before I had Janey, I felt that it was a kind of accusatory way to talk to kids.  When they are upset, it might not be possible for even the most verbal kid to think of how to phrase what is upsetting them, and I think a kinder approach would just be to hug them or be sympathetic.  But now, with Janey, I hate the phrase, because Janey CAN'T use her words.  And it's not because she doesn't have any words.  She has lots of words, but she can't use them, mostly.  She can recite them, she can plug them into set phrases, but she can't use them, almost ever, to tell me what's wrong or why she is sad.

That's a big part of why things like summer school are so nervewracking for me.  Janey started summertime school today (officially, it's Extended School Year, or ESY, but for Janey, I call it summertime school).  I did better than other years.  I didn't lie awake for hours last night worrying about today.  I know enough people that will be there to know at least someone will have an eye on her, and I was thrilled today to find Mr. Ken, Janey's ABA specialist, waiting there for us.  That made it like handing her off to a dear friend.  I didn't know her teacher, but met her today, after no-one knowing who she was for a good long time.  Everyone meets outside, and it's about how you'd picture a very lot of autistic kids being placed into the classes on the lists.  A lot of the kids are not eager to say their names, or can't.  But I was impressed at how relatively calm everything felt.  I left without extreme nervousness.  I know Ken will tell me how it went, honestly, and I know that the other 5 or 6 people I saw there today that know Janey (some of which I don't know, they just know Janey from other years) will be seeing how she's doing.  But Janey can't tell me how she felt about school.  If something scared her, big or little, she won't tell me.  Maybe there are noises in the school she doesn't like, or they have a routine that bothers her, or another kid might hit her.  None of those would be huge things, but without being able to hear about them and talk to Janey about them, they might very much be impacting how she is feeling about school, without me being able to help.

As we parked this morning to walk in, for one of the first times ever, Janey tried to fight me on walking to the school.  She tried to go the other direction, to a playground she could see down the street, one she liked last year, with a water sprayer.  Or I assume that is what she was resisting.  It could also be that she just didn't remember what summer school was, and was upset we weren't at her regular school (summer school is in a totally different place).  She tried again to pull away from me when we walked past a door that I think they use to go to swimming, which she also loved.  It took all I had to keep her walking in the right direction, which was scary.  She gets stronger all the time.  I had to use my patter---my non-stop talking routine to keep her distracted and moving "Hey, let's head to school!  I think we might see Mr. Ken there!  We might see some of your friends there!  I wonder what they will have for breakfast?  I think you'll have a great time! Let's keep walking!"  It worked, for now.  There will come a day, I am sure, when I won't be able to get Janey to go where I want her to go, physically.  That day scares me to think about.

And so, she's off.  She's off for the day, and I'm home, and I will never know exactly what she did all day.  I might get notes, I might hear parts of it, but with a child that can't use their words, so much of what they do out of your sight is a mystery.  I just have to hope, to fervently hope, that she is happy and cared for and well.

Summer blues

Janey is watching Curious George, which has become my 7-7:30 morning respite time.  She has no interest in it other times of the day, just that morning block!  And I am gearing up for the first day of summer.

I've never liked summer.  As far back as I can remember, the first day of summer felt like panic to me.  I like a schedule, blocks of time filled with predictable activities.  I enjoy the weekend, and holidays, but summer---that's a long time.  Couple that with my extreme dislike of hot weather, and even as a girl growing up in coastal Maine, probably the ideal summer location in the world, I didn't like summer.

With Janey, that feeling has grown.  Janey loves school.  There is barely a day she doesn't get excited to head out the door to school.  Every time I tell her it's a school day, she looks like I've offered her a huge treat.  This morning, I told her that school was all done for now.  She'll start summer school in a week or so, but that is never quite the same.  This week is open.

I feel sometimes like the worst mother in the world in how much I dread open weeks like this with Janey.  It's not that I don't want to be around her.  More and more, I love being around her.  But unfilled days for Janey are not lazy or idyllic or creative.  They are very tough.  Janey needs to be watched every single second.  She needs to be kept busy, or she either gets upset or retreats into a repetitive activity like seeking out paper to eat or things to spill.  Keeping her busy wouldn't be hard if there were more I could do with her alone.  But taking her on any kind of outing, like to the beach or a park or a museum, is not a one person job.  She is a runner, and I am not as fast as her any more.  She really needs at least two eyes on her, and one of them has to be pretty physically fit.  I still can take her to the store, but she hates stores except for grocery or drug stores.  I plan to do a grocery shop soon, but that doesn't fill up much of the day.  The few times I've tried taking her clothes shopping or browsing a craft store or the like---disasters. (read about one trip I particularly remember here)  She will tolerate being read to more and more, but not for more than about 10 minutes in a row.  She'll play with her iPad, but also, not for long periods of time, and she'll watch TV or videos, but aside from the fact I don't want her electronically entertained all day, she is too restless to do that for much time in a row also.

What do we do?  We often spend a lot of the day in the back yard.  If Janey has water and dirt to combine into mud, she's usually pretty happy.  But today is rainy and thundery, and even on days that aren't, after a bit Janey is soaked and filthy and we need to come in.  Often, I then turn to a long bath time, but Janey no longer is as interested in long baths.  So we piece together a day.  We read a little here, dance to music a little there, snuggle and sing a little, watch a bit of TV, eat, go to the grocery store, bug her brothers, pat the cats---and it's still 10 am and there's a lot of day left.

What would most 8 year olds do in the summer?  Well, most 8 year olds would have friends to play with.  With older brothers like Janey, they would have gotten into video games and would be playing them.  They would know how to read, and we could go to the library every day.  They would be able to entertain themselves with drawing or crafts.  They would be able to go to camp.  We could go to the beach, just the two of us.  We could go to playgrounds without the fear of them running away.  I feel guilty, as I always feel guilty, that I dread a day alone with Janey so much.  But thinking of it that way, I do see that a day with Janey is not a day with most 8 year olds.  There is never one adult alone all day at school responsible for Janey.  In the course of the day, she might be under the care of 6 or 7 different teachers, aides, therapists, etc.  They do a wonderful job, and I am extremely grateful for them.  I can't do their job alone.

And I worry I am coming across as complaining about caring for my own child.  Although it might sound that way, it's not the case. It is my job to be with Janey, and my joy.  But I wish for her that there were more options open for her open days.

Two views of a day

View one

We went to New Hampshire to a friend's lake house. Janey cried a good deal of the trip up. Once we were there, five little kids, nieces and nephews of the owner, came over to visit. They were ages 2-8. All of them, including the 2 year old, talked far better than Janey, of course. Janey paid them little attention, although they were very kind to her. We spent much of the day trying to keep Janey from crying fits, fits that confused the kids. I got to see the mother of my old boyfriend, which was great, but Janey, while sitting on her lap, peed all over her. Janey several times tossed items around the yard into the water, making people have to get in and drag them out. During supper, she kept eating food off the other kids' plates. The ride home featured Janey screaming for hours. A long day.

View two

We went to New Hampshire to a friend's lake house. Janey was thrilled to be on the lake. She adored the boat that was there, and spent a long time sitting on it even before she got to go for a boat ride. When she did get the ride, she was happy beyond words... (see picture!) The kids there were all sweet and understanding of Janey. One girl was the same age as her, and treated her like a friend, even saying she wanted Janey to come over soon for a playdate. Janey swam, played outside, ate well and had a blast. We all enjoyed the day a lot.

Well, I choose View Two. But I realize how much my mind edits things. The boys remember far more of View One, especially the screaming in the car. The other people there probably remember View One too. I wonder how the kids see it? They were quite confused by Janey, especially the girl her age. They kept asking "But WHY is she crying? Why doesn't she answer us? Does she do math in school?" They had never met someone with autism before. It was a baptism in fire. But I still will remember View Two most, especially Janey's bliss one the boat. That was me at 7. I lived for time on the ocean in my grandfather's boat. I've always loved the water, for as long as I can remember. So I pick to see that, not the screaming or the lack of toilet training or the non-talking. I pick the part I love.

Splash Park

I took Janey this afternoon to a splash park near us, a really nicely done one that used to be a wading pool and now has lots of fountain type things to cool off in. My friend Maryellen got us to go---she is very good at helping out with Janey and encouraging me to try things with her. It went pretty well. Janey was quite happy there. She seemed to like seeing all the kids, and she didn't mind the water. I think if we hadn't worked to get her in the water, she would have mostly walked circles around the edges, waving her arms around, but with a little encouragement she went into the water areas. It's interesting how other kids react to her. Kids her age or younger seem to have no clue she isn't totally mainstream. A boy ran up to her and tagged her and said "You're it!" and a girl brought over a Toy Story Pez and tried repeatedly to show it to Janey. Janey pretty much ignores them, but they don't seem to notice or mind---maybe a non-interested kid is less threatening if you are a little shy or something. Older kids seem to see there is something odd about her, but I haven't yet seen one making fun of her---I hope I never do, but that's too much to hope. Adults almost always now seem to know either that she is autistic or that something is odd about her. She gets some stares---mostly when she is yelling with anger or with happiness, or just really getting into circling and flapping. I don't mind the stares as much as I thought I would before I had a child like her. She's who she is, and usually I am concentrating so much on making sure she's okay that I don't have a lot of time to worry about it. She did a cute thing at the park---for about 15 minutes, she put her thumb in the "thumbs up" position to show she liked being there. The crying today was limited to the morning scream. I will have to see how things are tomorrow with Tony at work. She has no sense of work or why he should sometimes be home and sometimes not. I think that must be scary---the boys are sometimes here and sometimes not, as is Tony. It's why I don't go many places---I need her to have someone she knows will pretty much always be around.