Wednesday, July 31, 2013

Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.

Sunday, July 28, 2013

Warning! No Silver Lining!

If you like to read heartwarming accounts, or tales of positive action and good results and special moments, you might want to skip this entry.  I'm sure I'll get back to that, but for now, I haven't got that in me.

I wrote optimistically on Friday about trying a new way to deal with Janey's screaming.  I felt enthused, and we saw some early good results from ignoring the screaming.  I woke Saturday determined to work on that method.  However, Janey didn't have the same determination.

We all can ignore screaming.  But Janey doesn't like to be ignored, and so as soon as she figured out what game we were playing, she upped her own game a notch.  We can ignore screaming, but it's a lot harder to ignore screaming when it's combined with grabbing various objects and flinging them around violently, or with biting her own arm so hard it leaves marks, or with smashing into her brother as hard as she can, repeatedly, or with taking any liquid that is available and spilling it on the ground.  Or even just sticking to the basic screaming, but keeping it up at incredibly loud volumes for an hour, to the point that one gets quite concerned that anyone hearing her would assume she's being horribly injured.  Or when, if you attempt to take her in the car to diffuse things, she rolls down the windows, throws things out the windows, thrashes around so much it's impossible to drive, hits anyone in the back seat with her and makes so much noise that passerbys are startled.  Or turns off the TV or computer someone is trying to watch, over and over and over and over.  Or strips off her clothes literally hundreds of times a day.  That was yesterday.

There were little, tiny moments in between the horrible moments when Janey appeared perfectly calm and happy, when she sang or played outside or was sweet to us.  But it's hard to relax and enjoy that when any hug can suddenly turn into fury, when from one second to the next happy talk can become deranged sounding screaming.

When Janey is like this, it's not living.  It's surviving.  We are shell-shocked.  We look at each other and just wonder how we will make it to night.  And when we slip and let ourselves think about the future---there doesn't feel like a future.  There is no end in sight, ever.  There is only Janey getting bigger, getting to the point where she will be stronger and we will be weaker.

I'm not going to put a silver lining here.  I am going to say that it isn't always like this.  If you read back in this blog, sometimes there are weeks or even months when Janey is delightful, wonderful, when the fact that she is autistic and intellectually disabled is not a big deal, because she is simply Janey and we are delighting in the Janey she is.  I have hope that she will cycle back to that.  That is how we do it, when people ask us how we do it.  We hope.

Friday, July 26, 2013

Trying something new to combat screaming

This past week, Janey's screaming has become a huge issue.  Every single time she feels the slightest bit angry, sad, annoyed, impatient or any kind of emotion except completely happy, she has been screaming.  And it's a loud, eye-shattering intense scream.  The kind of scream that is literally dangerous when you are driving, the kind of scream that wakes up sleeping people and scares the cats, the kind of scream that can quickly drive you to despair.  Yesterday afternoon and evening was the worst.  She screamed over and over and over.  She kept asking for videos, and then the minute they were on, if they weren't exactly what she had in mind, or if they weren't at the beginning, or if she had just changed her mind, she'd scream.  She would ask for food, and if we weren't magically able to make it appear instantly before her---you guessed it, a loud, loud scream.  She finally got to sleep, only to wake at 2 and stay up for hours, displeased with us and letting it be known by screaming.  She had school this morning, and the minute she got home, she started the routine again.  By around 4, we were ready to flip out.

I'd been thinking for a few days about trying something new.  I have very, very rarely used ignoring as a technique for Janey.  This is because when a child isn't that verbal, it seems wrong to ignore a way they are communicating.  However, lately Janey's talking has improved a good deal.  I KNOW she can at least in a word or two tell us what makes her mad, or she can if she calms down enough to do it.  And by trying to do what she wanted to prevent the screaming, we were reinforcing the screaming.  This is something that even a year ago, I wouldn't have said.  I didn't think then that Janey was capable of making that kind of connection.  But I am realizing Janey is progressing, and she understands more than she used to.  So I talked to Tony and the boys, and we decided to tell Janey that we were no longer going to answer her screaming.  If she screamed, we were just going to ignore it.

This sounds scarily close to what just a bit ago I wrote about not liking, the "use your words" phrase.  But I really feel there is a difference.  I know Janey can't always use her words.  But she can get across what she wants in many other ways.  She can hand us a movie.  She can lead us to food.  She can stomp her feet.  And most of the time, she can say enough so we know what she wants.  And of course, she can scream.  And if the screaming was a once in a while thing, a sign of truly being very upset, I wouldn't mind it.  But it was turning into her first line of communication, probably because it was working.  We were trying very hard to avoid it, so we were likely doing things quickly to make her happy.

We told Janey about our new screaming policy, in words we thought she'd understand, and then we did a series of roleplays, where Tony asked me for something, I said "not right now" and then Tony screamed, and I ignored him.  Then we did it over, with everything the same but his response being "I am VERY ANGRY at you!" after which I answered "I'm glad you told me that!  It's still going to take a minute to get you what you want, but it's great to know how you feel!"  We overacted heavily, and switched roles around.  Janey watched in delight.

It only took a few minutes for the first scream to come along, and we ignored it---that first time, also saying that out loud "We are ignoring screaming today!"  Janey's scream turned to a happy look.  I think she was testing us.  And she then said loudly "I want BACON!" Luckily, we had bacon, and Tony made it for her.  The last few hours have been quite free of screaming.

I have NO illusions this has solved the screaming problem.  I'm sure it will be back.  But it felt very good to decide on a way to handle it, discuss the way and be in agreement.  It made us all feel a little less desperate.  Of course, we will stay near her if she is screaming out of control.  We always stay near her.  And of course there would be exceptions if she got herself into a state where she couldn't talk or communicate otherwise.  But the whole thing is an illustration that Janey IS making progress.  She IS understanding more.  Or at least I hope she is.  We'll see how the weekend goes.

Wednesday, July 24, 2013

The Storms and the Calm

Janey is having a rough night tonight.  Every half hour or so, she is screaming, that deafening scream that is fairly new, that is the alternative to the daylong crying it seems to have mostly replaced.  The crying was sad, but the screaming is angry, furious, and we are never sure why.

Much of the summer has been terrific so far.  Janey is talking better than ever, although we hold our breath about that, because her talking ebbs and flows.  But she is saying many more complete sentences---where she used to say something like "purple!" now she'll say "I want some purple ice cream, please!" or if I say "Maybe we'll go to the grocery store after school" she'll say "After school we might go to the store!" turning what I said around a little.  These kinds of sentences are still rare, but not shockingly rare any more, at least over the last month.  The other day, Tony said "We'll have to try to find Uncle Pino at the store" and Janey said "I know where she is!"  mixing up the pronoun, but delightfully responsive!  This morning, she looked around for William, who is in Maine for a few days, and said "Worms!  Where are you?" (Worms being a nickname I sometimes call William)  It was great, both that she noticed he was gone and that she verbally expressed that.

However, the storms come on suddenly and severely.  We can be having a perfectly good day, and suddenly, Janey screams, bites her arm and gets hysterical.  It's scary.  It was like what Mother Nature did yesterday as I was driving to pick up Janey at school---an amazing heavy rain came on and within minutes, the streets were flooded and I was fearing for my life.  An hour later, there was barely evidence anything had happened.  That's Janey.

I am working on figuring out a cause for these storms.  Sometimes, I have a good idea.  After school today, I took Janey into the library.  We have a usual routine there---we pick up the books I have held at the desk.  I order books online to come to my branch library, and Janey knows that routine.  This time, however, there was a book I wanted that I knew was in the stack there, so Janey and I walked into the dark and a tiny bit creepy stacks to get it.  She was okay at first, but when we got back to the desk to then get the held books, she lost it.  I had messed everything up.  She screamed her piercing scream, and I was glad that we were in a place we've been often before, so at least the workers, if not particularly sympathetic, at least knew Janey and had seen her in such action a few times before.  I did my patter, saying to Janey "We did something different, didn't we?  Mama should have told you ahead of time we were going to do that" and Janey screamed "Mama SHOULD HAVE TOLD YOU!"  I am not sure if that was echolalia or her true feelings, but I should have.  Other times, though, I have no idea what caused the storm.  I try to work like a detective, and sometimes do come up with a theory.  I've figured out any mention of dogs, even if the dogs aren't shown, sets her off.  She is truly terrified of them, and hearing a distant bark, one I might not even much notice, can be a problem.  Sometimes, though, even my best guesses and detection come up with nothing.  I figure Janey is thinking about or remembering something upsetting at those times, or has something stuck in her head, or has a pain someplace, or who knows what.

I feel like we are in a transitional period with Janey.  I am seeing her mature a lot this summer, but maturing doesn't necessarily being getting more mainstream.  It means she is becoming more aware of the world, and that might be a very tough thing for a girl that sees she doesn't quite fit in it, a girl with fears and thoughts and routines and ideas that are hard for her to express.  I think we are in for a lot of flash floods, hopefully often followed by the brightness of a world after the storm.

Saturday, July 20, 2013

"That's the sad part"

In the car, or during one of the many times a day she wants me to "snuggle on Mama's bed", I often recite nursery rhymes to Janey.  Janey likes to hear them, and frankly, it's sometimes just to keep me alert and not falling asleep, as she can be a poor conversationalist at times.  We've been doing this a lot lately, and the other day, I was reciting "Sing a Song of Sixpence" to her (you probably know it, but if you don't, it's here) and she was singing it back and happy.  Suddenly, though, she wasn't.  She started screaming one line of it---"And down came a blackbird and snipped off her nose!"  Which, if taken in isolation, certainly is a little bit of a disturbing line, but Janey had never particularly noticed it before.  I immediately started my patter "that part is VERY PRETEND!  Birds NEVER snip off people's noses!  That's a very silly part!  It's not true at all!"  Janey started reciting this back, and then saying the whole rhyme, and while she screamed the snipping part, she didn't get too upset by it.  About the third time she said it, after that line, she said in a thoughtful voice "That's the sad part"  I was blown away.  I hadn't used the word sad, and I've never, ever known Janey to comment like that, on something abstract like a nursery rhyme.  I've never really heard her call anything sad on her own, although she'll say "I am sad!" when I ask if she is sad or angry, sometimes.

Of course, it set off a big wave of thinking on my part.  I wonder how much more Janey understands of stories or songs or poems.  Last summer, she got upset when she heard the song "He Stopped Loving Her Today" (this is the post about that)---that's the closest I can remember to this.  It makes me think that a lot of times, when Janey gets upset out of what seems like nowhere, it's not nowhere.  It's something she's just heard, or something she is thinking about or remembering.  We know she gets upset about tone of voice, if she thinks we are arguing or upset, and I know some videos upset her after a number of viewings, when she starts to understand them more, but I hadn't really thought she understood more abstract readings well enough to get upset.

I am thinking lately I underestimate Janey a lot.  I wish I didn't.  To someone reading, hearing about incidents like this, it might seem obvious she has a lot more ability to understand than I give her credit for.  But I write about the exceptional incidents.  There can be days and weeks and even months where Janey gives no sign of understanding things like that rhyme.  I read someplace recently about a mother saying she almost hopes her autistic child doesn't a mind that is hidden and secret, that is understanding everything, and I can get that.  Of course I wanted Janey to do all she can do, but it's heartbreaking to think that she might be in there getting all we say and everyone else says, bored by schoolwork that she has mastered mentally years ago, longing for me to read her some kind of complex literature, and that I'm failing her by not doing so.  I don't think that it's the case.  I think Janey does understand a lot, but I think these moments of extreme clarity are like the nights that somehow you can pull in very far away radio stations, because the conditions are just right.  The receiver is there, but so many other components are there too, a lot of which need to be lined up just right to have those rare moments of radio from far away (if you are interested in this hobby, called MW DXing or AM DXing, here's a Wikipedia article about it!)

So I am going to try to remember that it might be the rare day that Janey is receiving enough to be worried about a blackbird snipping off her nose, or someone stopping loving someone.  I want her to know that I will do everything in my power to keep the blackbirds at bay, and I will never, ever, ever stop loving her.

Wednesday, July 17, 2013

Deciphering Janey's Day

One of the most frustrating parts of having a child who is not really usefully verbal is never hearing about what she does when she isn't with me, firsthand anyway.  I adore hearing about my kids' days, but with Janey, the time we aren't together is usually a mystery to me.  I hold onto any tidbit I can get from teachers or paras or therapists, but the parts that are usually the best to hear about are the little incidental things, and it's also always telling what gets chosen to tell me by the boys.  You can guess a lot from what names you hear a lot and what classes are never described.  Janey, though, remains completely silent about her school days almost all the time.

This summer, though, she is saying a bit more on our rides home from summertime school.  It's not telling me about the day, but it's echolalia that I am pretty sure comes from school.  However, out of context, it creates puzzles that are near impossible to to solve, although it's fun to try.  Today, she kept yelling out "Roll the dice!  Okay, TWENTY FIVE CENTS!"  and at one point, "Have you got any chips?"  I'm assuming it was some kind of math game, and not that they were teaching the kids some low-level gambling.  I've also heard a name over and over---Elliott.  I was trying to figure out if he was a character on TV or a video, or a real live person.  That got solved today when I saw a little boy as I went to get Janey, sitting with her class, with an "Elliott" name tag.  That was pretty exciting to me---it was one of the first times I've heard from Janey about a child in her class that was a name I didn't already know.  I've heard quite a few quotes with his name is it..."Elliott!  Don't do that!  That's not funny!" (followed by Janey laughing her head off, as I guess to her it certainly WAS funny) and "Elliott!  Come back over here right now!"  I couldn't resist, as we were walking out, saying to Janey in that tone that comes from who knows where "Is Elliott your BOYFRIEND?"  If I were writing a book of parenting advice, I would certainly say not to tease kids that way, but hey, I'm human.  Janey is the 3rd child out of three I've found myself teasing about the opposite sex.

One of the most wonderful things teachers can do is to tell parents of special needs kids about what their kids do during the day.  I've been pretty lucky that way.  One thing I'm very conscious of at school is not asking for special treatment.  I know in the mornings and afternoons, teachers are getting lots of kids in and out of classrooms, and I try hard not to take up their time then asking questions.  But I hope other parents, and teachers, do understand that what they tell me or what I tell them is often the ONLY way communication goes back and forth, unless it's something written down.  Just a few times, I've gone to school different years and found every other kid wearing some special thing for some special day, or I've found out after the fact that a party date had been changed and Janey hadn't brought what she should have brought for it, or that an afterschool activity had been cancelled.  This happens very rarely, but even the few times felt tough for me.  Probably not for Janey, but when you have a child with special needs, you especially want them to be wearing silly clothes if that is what the day features, or to have a treat to give out if everyone else does, or so on.  Sometimes, a child's special needs creates special needs for the parents, specifically, a special need for communication.  Janey's teachers have used email more over the last few years, and I love that.  It can be read when there is time on both sides, it's there to refer to again if you need to---it's great!

One of my biggest dreams for Janey---that one day she'll actually, directly, tell me something about her day.  She'll say "We had music today" or "I played with my friend at recess".  I would love that so much.  Until then, I'll live for the little scraps she is starting to throw my way!

Tuesday, July 16, 2013

Janey being the bright spot

The last four days or so have been tough in a lot of ways.  Some weird thing is going on with the power in our section of the city, resulting in the last 3 nights out of 4 being completely without power, in the midst of a very hot spell.  It felt extra hot for me, as I was quite sick, with a high fever over the weekend and a throat that was bad enough so when I finally went to the doctor yesterday, her first words on looking at it were "Yikes!  Wow!"  In the midst of all this, somehow our washing machine stopped draining, resulting in a buildup of laundry to the sky, with no end in sight.  Yesterday, after a day when the power was on and off, and kept browning out, and finally went off once again, and then back on, and then they called to say it would be off all night, tiredness from sickness and sleepless nights caught up with me and I got into a weepy spell, just unable to snap out of it, despite firmly telling myself that all these were minor, first world type problems.

But what was the sunshine through all this?  My sweet Janey!  I can't think of four days of sweeter, easier behavior from her!  She has been, without a single qualification, a delight.  A smile has barely left her face, she's been saying cute things and showing a lot of understanding, she's gone along happily with anyplace we needed to go or anything we needed to do, she slept all night in the hot without a problem---she's been a joy.

Of course, with my overthinking mind, I'm trying to make a connection or a conclusion here.  One thought is that for years now, Janey and her issues have been our focus.  It makes me think to have a spell where other things were higher on my mind.  And I wonder if that has actually helped her some.  Not that we have been ignoring her---we can't.  But we haven't had the laser focus on her I think we often do.  This has coincided with her, for the first time, showing a little interest in being alone now and then.  She can't be totally alone, of course, but if we can see her and check on her every minute, she can be in the next room.  Lately she is often going into William's room when he isn't there and playing with the electronic keyboard he has set up, or sometimes just lying down on his bed and resting.  It feels like she is wanting that down time, away from us all.  Although I think a lot of people have the image of autistic kids wanting to be alone a lot, that has not been Janey.  She's an extrovert, like her brothers and father, and she likes to be around us, whether happy or sad, or she has up to this point.  It's made me happy to see a little of myself in her, as I am the queen of liking to be alone.  Maybe she is starting to need some space, mental and physical.

Things feel better today. I feel better, and the power is back on, hopefully to stay.  And hopefully, Janey will stay happy.  For one of the first times, I feel like she helped me get through some bad days, just by being her sweet self.  Thank you, Janey!

Saturday, July 13, 2013

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!

Friday, July 12, 2013

Just Plain Old Awful

Here's a warning for you.  Usually I try to be at least somewhat upbeat in what I write, or at least not totally downbeat, but this post is not going to be that way.  I'm just going to take advantage of anyone reading this to rant a little about the second half of yesterday.

The first half of the day was fairly decent.  Janey went to summertime school, I got some needed housework done while she was there, and took a nice little nap.  I picked her up, and got a fairly halfway okay report (she had bitten herself a few times and freaked out a few times, but had good moments too---an aside here is that I bet for a lot of parents, that would be one of the worse reports of a school day they have ever gotten, but for me it was, well, not great but okay), got her home, managed to give her a shower and wash her hair, which she had not been wanting lately, got some dishes done although the hot water wasn't somehow coming out hot...nothing extremely wrong with that first half of the day.

Then, about an hour after her shower, I was starving.  I hadn't eaten lunch yet, and it was about 3.  Janey was on the couch playing with her iPad and pretty happy, so I went into the next room and quickly microwaved a frozen meal.  I was heading out to eat it near her to keep an eye on her.  She was walking toward me, and as often is the case, it took me a minute to register that her hands were completely covered with something like chocolate, that isn't chocolate, that is much worse than chocolate.  I looked at the couch, and realized it was covered with said substance, the floor was scattered with it, and the iPad was complete fingerpainted with it.  This kind of situation is truly a 2 or 3 person job, but there was only me in the house.  I followed the routine I've worked out---grab her first, head to the bathroom, clean her up (which is easier said than done, and I'll spare you the details), go back to the scene of the crime, make her sit on the other couch and tell her in extremely firm tones to STAY THERE, and start the fun cleaning up.  It took a long time.  Thank goodness I had the foresight to buy the best iPad protector cover I could find.  It's saved the poor iPad about 5 times now.  Removing the cover and cleaning it was the last step in the ever-entertaining sequence.  Needless to say, by that point my food was cold and I wasn't hungry any more anyway.

So, flash forward a bit.  We need to pick up Freddy at his summer job, which is about a 45 minute drive away.  Tony was home by then, and I decided Janey and I would ride along with him, as my exciting outing out of the house for the day.  Janey usually enjoys a car ride, and the first leg of this one wasn't bad---she screamed the first half, but then calmed down (and I again had the thought---for many people, that first part of the car ride would have been the worse car ride of their life, but I've developed pretty low standards for what is okay)  We picked up Freddy, and then we were idiots.  We were all starving (I still hadn't eaten) and right next to his work is an Old Country Buffet---the one restaurant we sometimes attempt with Janey.  We decided to go.  Well, this was an OCB we hadn't been to before, and I swear it was the most happening place I've ever been in my life.  Picture a huge room completely filled with families, millions of little kids, long cafeteria style tables, balloons and cotton candy and excitment all over.  I guess they have some kind of special summer night deal for kids, and boy, did the local crowd take advantage of it.  It was a loud and rocking place.  So did we do the sensible thing and realize it just wouldn't work for Janey?  No, we did not.  We went on in to eat.  You can pretty much write the rest yourself.  It might have been okay, if there had been any french fries, but for some reason, there wasn't.  That set Janey off.  She started to scream.  And the whole place, apparently eager for some dinner entertainment, stared at her.  Adults, kids, waitstaff, the whole crew.  They all stared.  I am not overstating this.  I was in the center of a huge room of staring, judging eyes.   We stayed as cool as we could.  I led a screaming Janey up to the buffet, found her some chips and salsa, and got her back to the table.  For a little while, she ate some salsa and was a bit okay, but when she started to scream again, I gave up and took her out of the car, after having stuffed in a few bites of I don't even remember what.  Tony and Freddy ate for a bit more, and then we were off for the ride home.

The ride home---oh, yes.  It was hell.  Janey screamed the whole way, with intensity.  We were trying to hear about Freddy's day, to regroup after the dinner, to just get home, and she screamed.  And bit herself.  And at one point, bit Freddy, although he managed to not get much hurt.  And flung herself around.  I tried my damnest to talk to her in calming tones, to sing to her, to do whatever you can do in a car to comfort a child who is completely totally freaked out.  It was one of the worst 45 minutes I've ever had.  I was never happier to get home, and Janey had worn herself out to the extent she collapsed and slept.

Normally I'd try now to sum this up and put some kind of spin on it, to figure out what I'd done wrong, to see the day from Janey's perspective, to learn from it, to not just be completely negative.  But for just this once, I'm not going to.  I'm just going to close here, with all I can really think of to think---I hope today is better.

Thursday, July 11, 2013

Sampler Week

I've been trying to sum up in my mind how the first week of summertime school has been going, and I realized there is really no way to categorize it.  It's been a huge mix.  The best was Tuesday morning, Janey's second day of school.  After Monday seeing her try to drag me in the opposite direction of the school to avoid going, Tuesday was the opposite---she was dragging me TOWARD the school, as happy as she could be, singing and skipped and thrilled to be going back.  That did my heart good to see.  I was feeling on a high, but when I went to get her that afternoon, I could see from the looks on people's faces the  day had had some issues.  The aide told me Janey had bitten her own arm a few times.  The scenario was familiar to me---Janey wanted to go for a walk, she couldn't go that very second and so she got mad and bit herself.  It was the first time they'd seen her do that, and it's an upsetting thing to see.  I reassured them that I know it happens, and her ABA specialist has gone over the plan for handling it, but it still doesn't make it easier for them, or for Janey.  That afternoon at home, she was mostly happy, but at one point, extremely suddenly, she started screaming and crying as hard as I've ever seen her do, and believe me you I've seen her cry pretty hard.  It was literally from one second to the next.  I managed to get her to stop by singing and talking in a low voice, and within 10 minutes she was happy again.  That is not Janey's typical pattern.

Yesterday, she was back to trying to drag me away from the school, but not with a lot of true effort.  She had done a little biting herself again, but there was less of the stunned look from the staff, since they'd had their baptism in fire.  I think when you see the charming, happy, delightful Janey, it's hard to picture what the depths of the tough times are like, and it's always a shock to people the first time they see it.

The sudden bursts of anger or sadness or what looks like despair are a new thing.  Usually, Janey'd go on about 2 week cycles of happy or sad.  You'd know if she was happy, she was fairly likely to stay happy, and the same with sad.  I am guessing this is early puberty related.  The up side is there have also been wonderful times of true connectedness and happiness.  A few days ago, Janey went over to Tony, hugged him, and said "I love you!"  That is the first time she's ever said that to him.  To say it meant a lot to him is putting it extremely mildly.  And she does love him.  She was waiting for him to get home last night, and I felt like it was one of the first times ever she'd really been waiting for him---that she understood he'd be home soon and was anticipating it.  I said at one point "Daddy will be home any minute" and she said in a high pitched thrilled voice---"Any MINUTE?" and went over to the window to watch for him.  It was great to see.

So it's been a week of samples of all kinds of Janey behavior.  She is keeping us on her toys.  I could hire her out to give people a quick introduction to lower functioning autism---within a day, she'd show them a huge variety of the behaviors they need to learn about.  It's tiring.  But somehow, it does feel a little like progress.

Monday, July 8, 2013

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.

Thursday, July 4, 2013

Hope and Holiday Blues

First the hope.  Yesterday, we visited a respite house a few towns over.  Janey's first grade teacher had told us about it, and I did an online application and got an email inviting us to visit.  It was wonderful.  The house is on a college campus, and is all set up for being a place for children and adults with disabilities to spend time and have fun.  There is a great rec area, a fantastic kitchen and a floor full of dream bedrooms, for overnights they sometimes have, and a lot more.  And best of all, they actually have openings!  Janey started the tour by freaking out of her mind, screaming hysterically.  So they got to see that.  She calmed down quite quickly once she saw some of the great things they had there, and tried every bed in every bedroom and by the end was hugging the woman who works there who gave us the tour.  We signed her up for two Saturdays this month.  One will be a trip to the Children's Museum, and another to a local beach.  We are holding our breaths---it almost seems too good to be true.  It's exactly what I had wanted, and even wrote about, and it actually exists!  There are scholarships available, but if we can't get one, with a little belt tightening we can manage---it's not crazily priced.  There are 6 overnights a year for girls, and we might even try one of those next month, and there are vacation week camps!  I keep thinking something will go wrong, or Janey will be too much for them to handle, or SOMETHING---it really feels like a dream.  I'll write more about it after the 12th, when Janey goes for the first time.

The holiday blues---that was today.  It's the 4th.  Tony and I felt a little down all day, and talked about it tonight.  Lots of reasons, but a big one is the isolation that having a child with a disability brings, especially on holidays.  Gradually, we have stopped going almost anywhere.  When we used to go sometimes to cookouts or the like with family and friends, it was almost always a disaster.  Janey would get hysterical, and we couldn't stay long.  Most all of our friends and family now also have littler kids around---grandchildren or kids of their own.  We can never be sure how Janey will act, and I think there is fear on both sides about that.  We don't reach out to go places, and we don't get invited, probably because people know we wouldn't go anyway.  Even if somehow Janey acts perfectly, we are still on edge.  We can't ever relax.  Someone has to be following Janey at all times, within an arm's reach, especially at other people's houses or public places. And so we stay here.  And usually, we are okay with that.  We aren't hugely social people.  But on holidays, sometimes it feels a little sad.

We were planning a family trip to a beach tomorrow, but talking about it tonight, we decided to make it just Tony and the boys.  The beach is quite a drive, and once there, it's not like we can all have fun as a family.  I want the boys to have relaxed, fun, happy times with their father (and with me) and if that means us not all being together, it's better than just skipping the outings.

The two themes tie together there.  If the respite works out, and Janey can have fun, and be a place where there is paid staff and volunteers that are there just to take care of her and the other kids, then we can have some time with just the boys.  We can relax a little, but it's bittersweet.  It's not a full family without Janey.  I had a moment just before going into the respite house of an overwhelming feeling of sadness.  I was so happy to be getting a chance to see about the respite we've craved, but it felt sort of...I don't know the word. They start taking kids at 8, and I guess that's because that's an age where you know it's not something the child is going to grow out of.  This is our life, this is Janey's life.  We are at a point where we need more help than just home and school can provide.  And in a way, that breaks my heart, although I am so happy there are wonderful people who will be able to give us that help, and give Janey a great time at the same time.  But it's not normal family life.  Or maybe it is---"regular" kids go to activities and sleepovers.  Janey will be able to also---just with a little more support.  Maybe I think too much about things.  Maybe I am overthinking this.

Either way, Happy 4th of July to all my USA readers, and happy start of summer to everyone!

Tuesday, July 2, 2013

Outbursts

In many ways, the summer is starting out well with Janey.  She has been happy overall.  We've spent a lot of time in the back yard, as always, and a lot of time watching PBS Kids.  Both of those are low key activities that let us both relax, and I think Janey needed a little down time.

What's new and a little tough to deal with are Janey's sudden outbursts.  These are quite different than the times when she would get upset and cry all day.  The crying usually came on at least fairly gradually, over the course of a few days, but the outbursts are out of the blue.  Janey can be perfectly happy and content, and suddenly, she starts screaming hysterically, flailing around, crying a river, overcome with fury or misery or who knows what.

We usually have no idea what has set her off.  I try what I think of as scaffold sentences, where I start with something like "I am very sad because I don't like...." or "I am very angry because I want...." and she often fills in something, but it's hard to say if it's what she is really thinking or just a random fill-in.  I don't think she usually knows herself sets her off.  It could be a sound, or pain someplace, or just the random pre-teen emotion that she has no idea how to handle.

The good thing about the outbursts vs. the days of crying is that they are easier to calm (and shorter).  Often, just holding her for a little while and talking in a soothing voice can calm her, or giving her something to eat, or just sometimes waiting it out.

In thinking of triggers, actually tone of voice is a big one.  Janey is hugely sensitive to the tone of conversation, if not the content.  We've had some family around the last few days, and while we certainly weren't fighting or screaming, we tend to tell stories dramatically, and Janey doesn't get that.  She hears our voices sounding sad or emphatic or upset, and she freaks out.  We often have to switch to what I think of as the "It's a GOOD thing!" voice, like Anthony on that Twilight Zone episode.

I often to remind myself that most kids Janey's age have emotional outbursts.  Often, although they will say what is upsetting them, the outbursts make little more sense than Janey's.  I remember that with the boys.  They could suddenly be hit by a huge wave of anger or despair, which they would label as being about a fight with each other or food they didn't like or homework, when I'm pretty sure it was just a feeling out of the blue, one of those pre-adolescent moments.  When I keep that in mind, Janey's outbursts feel a little more manageable and less scary than some of her past behaviors, as long as we don't let them escalate.  If they are the biggest challenge of this summer, I think we'll get by.