Catching Up

 So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on.  I didn't used to be that way---I'd write multiple entries a week, sometimes.  Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different.  Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up.

One big happening is that Tony got guardianship of Janey, officially.  I wrote about the endless seeming process we had go to through for this.  He finally had the day in court, and after hours waiting in the courtroom to be called (luckily we decided against bringing Janey to court with him, which wasn't required), the judge approved the guardianship without any real problem.  It does have to be renewed every year, because of the medication she takes, but she is assigned an attorney for this, and it shouldn't be as tough a process.  We were adviced just one parent should be the guardian, in most cases, so we picked Tony.  It doesn't make a big difference day to day, as Janey wasn't really apt to make a lot of decisions on her own, but for things like financial issues or health care issues, it just makes things more straightforward.

Another happening---Janey finally started getting social security.  It took over a year for her application to be processed, but she was approved, and gets a monthly payment now---not enough to live on, certainly, but it helps a lot.  We are getting retroactive payments back to her 18th birthday, too, in several installments.  We are using her money for the special food she asks for, and for clothes and pull-ups and so on.  This is the kind of social security for people who will not ever be able to work, and I'm very glad it exists, but if she didn't have a place to live and a family to care for her, it wouldn't go far at all.  But in our situation, it is helping quite a bit---the years since Tony retired have been tight ones financially to be sure.

We are currently in the middle of yet another endless process---what is called the 688 application.  It's the process for getting Janey services when she turns 22, in less than 3 years now.  It involves a referrel from the school, us sending in huge amounts of documents, then in this case, us getting back requests for even more documents, mostly it seems evaluations from all different phases of her childhood.  It's not enough to show she has severe autism---I guess we have to show she's had it all along, or that we didn't just somehow try to game the system by getting one diagnosis along the way and then just coasting along on that, reaping in all the exciting benefits it gave us....  I simply can't understand it can't be an easier handoff from school to adult services.  And from what I hear from other parents in Massachusetts, the services actually available once Janey turns 22 are very limited, even for those with severe needs.

This ties in a bit to one good development.  Janey has started an after school program.  She hasn't been in one for many years, since she was about 8.  This one is especially for people in what's called the transition program, the life skills program in the public schools for people 18-22.  It's 4 days a week, and there is transportation home (without that, we wouldn't have been able to do it, as in the evenings a drive to her school could take up to 2 hours in Boston traffic each way)  On the days Janey goes to after school, she gets home as late as 7pm---that is after leaving the house at 6am!  It took us a bit to decide whether or not we wanted to send her, but what it really came down to was that there just aren't many opportunities out there like this one for people like Janey---a chance to socialize with her peers, to have music and dance lessons, to live more of her life not just being home with us.  From what I hear about what's out there for those like Janey once they are 22, she might have many years of being home with only perhaps a day or two of a program a week, so we want to give her what we can for recreation and time away from her dull parents while she's still under 22.  We hope she's getting adjusted to it---there were some reports of tough days at first, with some crying, but we are continuing to be so impressed with her school and how much they care for Janey, and work hard to make her happy and keep her engaged.  We talked to the after school director the other day, and she was making fried rice with Janey---having realized the key to Janey is plenty of food that's been freshly prepared!

We are very happy with Janey's new teacher for the regular school day, too.  Janey still gets to see her beloved Jamie a lot, her high school teacher, but her new teacher, like Jamie,  is so caring and enthusiastic and just seems to get Janey---it's hard to believe she's had as wonderful teachers as she's had year after year after year.  

Over Thanksgiving weekend, Janey has a tough time.  We aren't sure what was up---if she didn't feel well, if she was confused by the afterschool starting, and then it being a half day before Thanksgiving, then a 4 day weekend---Janey isn't a huge fan of routine changes like that.  Whatever it was, she cried and screamed and was unhappy all day long for four days or so.  It was a horrible flashback to the past, when that kind of time happened so much more.  But it was also a good reminder of how far we have come, that we rarely have that kind of time any more.  Most of the time, Janey is pretty content.  She likes what she's liked for years---car rides, watching Tony prepare food and then eating the food, taking way too many showers, and watching certain episodes of certain TV shows or selected scenes of certain movies over and over and over.  Right now, it's mostly Vampirina, Fancy Nancy, Little Einsteins, Encanto and Toy Story 4.  We are never quite sure why she gets into the shows she gets into, but boy, does she love them once she does.

With Christmas around the corner, I have the bittersweet feeling I often get, but less than I used to.  Janey isn't into Christmas.  She likes the music, but otherwise, she doesn't care---she barely notices the tree, she doesn't generally like presents, she isn't happy with routine changes it brings.  I think I've accepted this, and allowed myself to focus more on the boys for Christmas, even now that they are getting into their later 20s.  It's a little bit of a regret of mine, that it took me this long to really accept that what she wants for Christmas is a day like other days, and we can give her that as much as we can while still making the day special for the rest of us.   I hope that all of you enjoy the holiday season in a way that works for your family.  I hope 2024 is a good year for all of us.  Janey will be turning 20, and I hope to keep writing about our journey with her through her 20s and beyond.  Happy Holidays!  Merry Christmas!  Happy New Year!

Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

Pre-Christmas thoughts

"Does Janey look forward to Christmas?"  A friend asked me that a little while back, and the question has been occupying my mind quite a bit.  At the time, I said something like "I'm really not sure", but as I think about it more, I am pretty sure the answer is no.  Janey doesn't look forward to Christmas, because I don't think she really knows what Christmas is.  

Our tiny tree

I'm sure here a lot of people would disagree with me, and maybe I'm wrong.  Janey knows what Christmas MUSIC is, at least a little, and she would probably be able to say who Santa Claus is, and she could identify a Christmas tree, or a wrapped present, when given the choice of 4 pictures.  But in terms of it being a special day, one with rituals and expectations---no.

I've dealt with this various ways over the years.  Some years, I just went ahead and sort of pretended that she did get Christmas.  I got her presents, I had her hang a stocking, I talked up Santa Claus.  Other years, I didn't do as much, and concentrated more on the boys, or on just enjoying the season in general.  I don't think it made a lot of difference what I did, except in that Janey picks up a lot of her emotional cues from us, and probably she was happier in general when I was more relaxed and cheerful, whatever worked for that in a particular year.

This year, I'm not feeling Christmas a lot.  We got a tiny, tiny tree---a tabletop baby one.  No stocking are going to be hung with care---the boys are old enough for Santa to skip our house, and Janey---well, she's never once actually taken anything out of her stocking on her own, or shown any interest in what was in it, so I don't think she'll mind a bit. The same is true of presents---she's never opened one on her own or cared what was in one once opened.  She's have a couple under the tree, from other people, but I'm not buying anything for her myself.  Instead, we'll do as we have done for a while---her present will be to buy videos to stream on Amazon TV throughout the year, when one of the streaming services decides to drop something she's gotten addicted to.

I don't think giving Janey a typical Christmas, when I tried to, was ever for her.  It was for me.  It didn't hurt anything, but it wasn't something she cared a bit about.  I wonder how many other times I've done things "for" Janey that weren't for her.  As long as those things are benign, as long as she's neutral about them, it's not really an issue, but sometimes, it's harder to tell than it is with this Christmas issue.

Christmas is something different for all of us.  A week ago, Janey sang most of "O Holy Night" to me.  I cried---of course I cried.  That was Christmas for me, and from her happiness while singing it, maybe for her too.  I hope all of you and all your girls and indeed all of your family finds your own Merry Christmas this year.

Flashback

Janey went back to school yesterday.  It was a good Christmas vacation.  She was happy a great deal of the time, and I think she enjoyed herself.  But she seemed pleased to be going back to school, back to the routine she likes.

She came home in a good mood yesterday, and I think school went well.  But something set her off around bedtime---tiredness or frustration over something she couldn't explain or who knows what.  Suddenly she was screaming and biting her arm and kicking and in a full meltdown.

That's when I said, without thinking, "I don't want to take her back to Bradley"  Bradley is the psychiatric hospital Janey spent time over two years ago.

Tony looked at me in surprise.  Once Janey was calm enough for us to talk, which actually didn't take long, he said "You are usually the one telling me not to jump ahead to the worst possible outcomes"  He was so right.  And I've been thinking about what I said all last night and all this morning.

I don't know what stress flashbacks technically consist of, but I think I had one there.  And I think I have them a lot.  No matter how well Janey is doing, it almost always feels a moment away from disaster.  She can be having the calmest, happiest day possible, and I fear that something will happen and things will go horribly downhill, and we will wind up in a hospital of one kind or another, or wind up getting a call from school that we need to have a meeting, we need to talk about her placement, or that Tony will call me from a ride with her and say she undid her seatbelt somehow and caused him to crash, or that some other random disaster will hit.

Thinking about the whole thing yesterday, I keep somehow connecting it to an article I read, one that on the surface doesn't have much to do with her meltdown or my reaction.  Here's a link to the article...link.  It's about a boy with autism who has won a Rhodes scholarship, after his mother took him out of school and gave up a career in medicine to homeschool him when he was eight.  It's a very nice article, and it's wonderful news, and inspiring.  But for some reason, it bothered me a great deal to read.

I've read plenty of articles about autistic people who have done great things, and they often include a parent's huge devotion helping them along.  I think this one just hit my eye at the wrong time.  Janey did so well over vacation, and I read this just as I was worrying about her going back to school.  There is no way I'm going to homeschool Janey.  I couldn't do as good a job as the schools do, and I need the respite desperately.  What hit me was the devotion of the mother.  Truthfully, I feel I'm pretty devoted to Janey.  And looking at all the parents I know of kids with autism, either in person or through this blog, there is so much devotion out there it's incredible.  But it doesn't all lead to Rhodes scholars.  And I'm not saying there shouldn't be articles about the times it does.  There should be.  But sometimes, despite my better judgement, it makes me feel like I somehow didn't devote enough, or didn't put my devotion into the right ways to help Janey.

Both my flashback and my reaction to the article are parts of the stress that I think most of us parenting children like Janey feel.  No matter how well things are going, we remember when it all fell apart.  No matter how hard we work at being good parents, we can find examples that make us feel like we didn't do enough.  I wish I had a pithy thought to put here, something to reassure myself and everyone else reading this that everything is going to be fine, that we are doing all we can for our kids, that we shouldn't have the fears and doubts we do.  But I don't have a thought like that.  I have only a hope that if you've also suddenly flashed back to the darkest times, if you've read an article that makes you feel like a slacker, that if you have lived this life too, you're not alone.

If Janey had her way about holidays...

This morning, Tony left very early to go to New York State to get Freddy and his friend Cheryl and bring them home for Thanksgiving.  This was a change in routine, as I got Janey ready for school and got her on the bus on my own.  Janey never says much in the morning, but today, she said even less.  She went through the stages of getting ready fairly cooperatively, but she kept looking at me with a confused and wary look.  I explained to her as best I could that Daddy was getting Freddy, that he'd be back later, that her brothers were coming home today, that school was going to be shorter than usual (they have a half day), that we'd have a nice big meal tomorrow, that school would start again Monday---all that.  And I thought, as I've had many times, that Janey would prefer there to be no holidays at all.

I don't know that for sure, of course.  But I strongly suspect it.  Holidays, to her, are upsetting changes in the regular routine.  They involve Mama and Daddy doing things they don't usually do, and not being available when she expects us to be.  They mess up the school days and weeks.  They have people trying to get her to do odd things, like blow out little fires on pastry, hang socks up at night, go through many steps to open up something she doesn't want or care about, dress up in odd costumes and go to houses and ring doorbells---a lot of weird stuff.

I think sometimes if Janey was an only child, we'd pretty much have birthdays and Thanksgiving and Christmas be much like any other day.  There are parts she likes, of course.  Christmas music is one of her favorite things on earth, and in fact "Frosty the Snowman" got the only smile out of her this morning I could get.  She enjoys a good cake as much as anyone.  And she'll be glad to see her brothers.  But overall, holidays stress her.  But she isn't an only child, and even if she was, Tony and I are people too.  We'd want some holidays in our lives.

The combination of autism and holidays, or Janey and holidays anyway, bring on two big feelings for me---guilt and sadness.  The guilt comes on, strangely, when I do things to make holidays less stressful for her.  If I don't get her more than a token gift for Christmas, because she hates opening presents and has no interest in 99% of anything material, I feel guilty that she has nothing under the tree.  If I don't take her trick-or-treating, as I didn't this year, I feel guilty that she is missing out on something I loved as a child.  The guilt is foolish, I know, but it's there.

The sadness---that is on me.  It is my sadness.  Janey is not sad that she doesn't fully get and enjoy holidays.  But I am.  Holidays, in a lot of ways, are for parents.  We look forward to seeing our kids pull treats out of the stocking, gather huge piles of candy and sort them, blow out candles as we wipe away tears and think about how fast they are growing up...holidays are the Hallmark moments of parenting.  And I admit---it makes me sad, in a completely selfish way, that Janey would prefer to skip so much of what I want to experience with her.

Thanksgiving is one of the easier holidays.  It involves mostly eating, which Janey certainly does like.  It starts the season of Christmas music, which can never start too soon for her.  She even sometimes likes the parade on TV a bit.  So, we'll try to keep the day as routine as we can for her, while sneaking in bits of the parts she will at least tolerate.

Happy Thanksgiving 2016 to all of you.  I am incredibly lucky to have found this community, and I am thankful for those who read this blog, extremely thankful.

The Christmas and Beyond Report

We're in that strange week, the one between Christmas and New Years.  Tony has the week off---he usually takes this week off, and the boys are both home, and it feels like an in-between time, a neither here nor there time.  That isn't always easy for Janey or kids like her.  So, how it is going?

Attempting to interest Janey in a present.  The cat is about as interested as she is.

Not badly, really.  Compared to other years, it's going quite well.  Christmas itself was a nice day.  It was nice in that Janey didn't cry, didn't melt down, didn't have any fits.  She also didn't really participate in anything Christmasy, but we can handle that.  She wouldn't take things out of her stocking, wouldn't open the few presents we had for her, and wasn't interested in them once we opened them.  I think we were all okay with that, though.  The boys liked their presents and we all had a good day.  I wish it was more of a special day for Janey, but that's not a huge deal.

This week, Janey is also doing fairly well.  She's going for many, many rides in the car, her preferred form of entertainment, and she's doing a lot of cruising YouTube Kids.  She's been somewhat tired out, and has been napping some, which is not her usual routine.  Overall, she's been mellow, and somewhat withdrawn.  Her talking has been at a low point for a while now, and that isn't changing.  She isn't saying much beyond the routine phrases asking for a car ride, soup (boiled kale) or salami, or help putting on a particular TV show.

I wonder sometimes if we are settling into the next phase of life with Janey.  It's a lot easier in many ways than it used to be.  The worst of Janey's rage and intensity seem to be gone for now.  However, along with that, she seems slowed down.  She isn't learning new things, or saying new things, or making leaps forward.  Progress with Janey was always slow, and often ebbed and flowed, but this feels different.

Janey with her brothers and our friend at our annual Christmas get-together

Maybe I need to think about this differently.  We can do a bit more with Janey now than we used to be able to, and this could be an opportunity for her to experience new things.  For example, our traditional Christmas Eve at our friend's house was cancelled due to their illness, so we went instead on Sunday afternoon.  Usually, Janey falls asleep early in the evening, but since this was afternoon, she was awake the whole time we were there, for about four hours.  At times, it would have been inconceivable to think of spending that long someplace other than home as a family, but although we did need to take Janey for a little car ride and a few walks, she handled being there all that time without meltdowns or screaming.

Things could change on a dime.  Janey could go back to the tougher times, or stay calmer but get more responsive and talkative.  For now, though, I've been thinking a lot about times people told me it would get easier.  I doubted they were right.  I didn't think it ever would.  But for now, it has, and I hope I can say to others that might be having very hard times right now---it truly does get easier.  I can say that from the perspective of someone who knows absolutely how tough the tough times can be.  Hold on.  Hang in there.

A wonderful day

Once in a while, everything aligns and there comes a day like yesterday, a wonderful day for Janey and for us.

The first special treat of the day was seeing Janey see her brother William.  William is a junior in college, and Tony went to pick him up and bring him home from Christmas while Janey was asleep last night.  First thing in the morning, we took her into his room.  It took her a minute to register she was really seeing him, but once she did, she was thrilled.  She hugged him, over and over and over, backing up after each hug to look at him with a huge smile and total delight.  

Soon, it was time to dress Janey up for the next treat of the day.  A friend very, very kindly gave us tickets to see an autism-friendly performance of The Urban Nutcracker, an updated version of the classic ballet.  I didn't tell Janey about it until it was time to get dressed.  The part she might have been most excited to hear was that my friend Maryellen was going with us---one of her favorite people in the world.  I dressed Janey up in a dress with a sparkly skirt, and tried to manage her hair---it's at a hugely awkward inbetween stage while we wait for it to grow out.  She looked pretty anyway!

Janey was extremely cheerful as we drove to the city and parked to walk to the show.  She seems to love the city, the lights and excitement and bustle.  We need to take her there more.  We got to the show near starting time, and Janey happily sat down to wait.  When the curtain opened, it was to a dancing, stomping, drumming number.  She was overcome!  She almost exploded with happiness and excitement.  She also did something I haven't seen her do out of happiness before---bite her arm.  She didn't bite it hard enough to hurt, but more it seemed almost as a way to keep from screaming with excitement.  I've read recently that sometimes things like arm biting are comforting to kids with autism, and this was one time it seemed that way, a bit.

My happy, sweet girl

Autism friendly performances (at least the two we've been to!) are a great idea.  It's wonderful to be able to relax and know that I don't have to worry about Janey's behavior.  She needs frequent breaks, even when she's watching something she loved, and we got up and took her out several times.  When she came back, she was happy to watch for a while, including at one point for about 20 minutes.  There was a scene with "real" snow" falling on the stage, and Janey said "It's snowing!"  I loved watching her face as she watched the show.

The most special part was during the intermission, when a little boy came up to Janey and said "Hi, Janey!"  It turned out he's in a classroom next to hers at school.  Her reaction was incredible!  She was THRILLED to see him.  They held hands for a long, long time, smiling at each other with huge smiles and laughing.  They even had a little conversation, something that sounded like it was taught by ABA---he said "How are you?" and she said "I am fine!"  Then later he said "What's your name?" although he obviously knew her name!  She didn't answer that, but seemed to love to be asked.  I was in tears watching them interact.  It was by far the most I've ever seen Janey interact with a child her age.  It felt like that rarely seen thing---a Christmas miracle.

After the show, we had a quick meal, along with Maryellen.  The whole time (and indeed the whole day), Janey was happy.  At one point, Maryellen and I said with amazement how we would not have dreamt that a day like this would have been possible a year ago.  

We went after that to pick up Freddy from the bus, also coming home from college.  Janey was very happy to see him too.  On the way home, she said to him "Want to play your game?" by which she meant, we figured out, a game where Freddy chases her and says "I'm gonna get you!"  I was really struck by Janey calling it a game, knowing that it's something associated with Freddy that they do for fun together.  We've never called it a game, and it's cool she understands what that word means enough to use it there.

Freddy, Janey and William

The rest of the day was terrific, too---having all the kids at home, joking around, and Janey in the midst of it, happy and laughing.  It was a day I want to remember always, and reflect back on when days aren't as bright.  It's my Christmas present, one of the best ones I've ever gotten.

Christmas, not so much presents!

I recently asked if people on the Facebook group that is a companion to this blog wanted to talk about their girls at Christmastime (if they celebrated Christmas), and many did---thank you to all of you!  (and if you are reading this and have a girl with autism in your life, and you aren't already in the group, I'd love to have you join---it's a friendly and welcoming place!)

A few things stood out about our girls and Christmas.  One is that it's not about the presents, for the most part.  Another is that it can be an overwhelming time.  But with those things kept in mind, most of the girls and their families did find a way to enjoy Christmas and make it a special time.

The part about the gifts was striking to me, in that most of the girls were like Janey---not big fans of gifts.  Of course, there are exceptions, but for the most part, gifts were one of the toughest parts of the season.  In a way, that might sound like every parent's dream.  We hear over and over that Christmas isn't supposed to be about getting presents, and of course it isn't, but presents are a big part of it, and to have a child that no only doesn't much want any presents but can even be actively upset by them is hard.

There were some great ideas people have.  One person talked about making the Christmas stocking full of small unopened toys, instead of having presents under the tree that had to be opened.  Another idea was having one box with all the presents in it, to reduce opening.  A great idea was giving a little present each Sunday of Advent, to practice.  An important thing is finding presents our girls actual like---like sensory toys or food.

I've always struggled with presents for Janey.  Part of it for me is a feeling of equality.  I don't want to just give her brothers presents and not her (although, to be honest, Janey would not notice or care).  And I ENJOY getting toys and gifts for Janey.  But she hates opening presents.  She doesn't get it, and it is not fun for her.  This year, there was a wonderful moment when I asked her what she wanted for Christmas and she actually answered "a book", so of course there will be a pile of books for her under the tree, but I won't wrap them.  I will give her one wrapped present---a tabletop drum set.  And her stocking will have a lot of chocolate in it (yes, I know I've said in the past chocolate makes her crazy and insomniatic, but she loves it, and I want her to get something she loves)  I won't try to make her watch her brothers open things, and I won't be upset if she shows no reaction to anything she gets.  That's the plan, anyway.

I think one of the most stressful parts of Christmas for us as autism parents is that our kids often have a hard time sharing Christmas with extended family and with friends.  We can control things to some extent at home, but it's hard when visiting others.  And it's hard sometimes for grandparents and other relatives, too.  They want to share Christmas, to give presents, and it seems to go against what is expected that the very sharing and hospitality and presents can be a source of stress.  A lot of families just don't make visits, or if they do, it's to one place each year.  We go every Christmas Eve to a dear friend's house.  Janey knows the family well, and I think knows that is the plan.  She is an early to bed kid, and so we have a lot of the night after she falls asleep for the our two families to have time together, but while she's awake, they know her and make sure there's food she likes and routines she understands for her to enjoy.  That means a great deal to me.

What do our girls like about Christmas?  A lot of girls like the tree and the decorations.  Traditions also seem to fit naturally with autism!  They are routines, after all.  And for Janey, and some other girls, the best part of Christmas is the music.  Starting at the beginning of November, I switch my iPod to an all Christmas list.  I know a lot of people hate Christmas music too early, but for Janey, that's a compromise---she'd listen all year, and at least keeping it to two months makes it a little more special!  I sing carols to her every night at Christmastime as she goes to sleep.  She seems each year to pick a carol or song that she loves best.  This year, it's been "Hark the Herald Angels Sing"  She especially seems to like later verses of carols.  She's gotten very annoyed with me a few times for not remembering all the verses of "We Three Kings", especially the depressing one about sorrowing and dying!

One of the most amazing and wonderful moments ever with Janey, one of those I hesitate to mention almost because it seems like one of those "autism is magic" stories that in daily life don't really happen that often---when Janey was about 6, she heard the Hallelujah Chorus from The Messiah for the first time, in the car.  She was quiet and looked to be in awe for the whole thing, and when it was over, she burst into applause, clapping for a long, long time---something she had never done before for a song, much like the first time George II
of England heard it and stood up in honor, which has become the traditional thing to do.  It was a moment I'll remember all my days.

Autism never takes a holiday.  That can be very tough at times like Christmas.  It's hard having to adjust plans, presents, visits and expectations for the whole family to avoid meltdowns, but not doing so is even harder, as a meltdown filled Christmas is not fun for anyone.  Overall, I felt encouraged by hearing from others about their Christmases.  We seem to find a way to find joy in the season even with the challenges.  It's not easy, but not much of this autism parenting gig is.  I hope all of you have a wonderful Christmas and/or New Year.  We are all in this together, wherever in the world we might be, and that truly does help.  Merry Christmas.

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.

A Parenting Book for One

One of the huge frustrations of having a child like Janey is that any mainstream advice books for parenting absolutely don't work.  They don't cover kids like Janey.  They give advice that assumes a child can talk at a age-appropriate level and can understand basic cause and effect.  They assume a child is motivated by praise, and that a child's actions have external stimuli.  They don't cover outbursts that become so extreme a child ends up in the emergency room, restrained by many people.  They don't deal with screaming with absolutely no reasonable cause that lasts for hours or days.

I've realized over the years that I need to write my own parenting book, one that covers one child only, Janey.  I've written it in my head.  But I'm going to gradually post it here, bit by bit.  I do this because perhaps some parts of it will also apply to other children a bit like Janey.  But I caution---much of it won't.  Take what you can use, but each of you with a challenging child will also eventually write your own personal parenting book.

Today's chapter---how to calm Janey down when she has an outburst.  I should say, how to MAYBE calm Janey down, as very often, you simply can't.  But a few things sometimes work.  I'll list them in order of what will work for a milder outburst up to what we use in extreme situations.

1.  Food..  Often, when she's upset, she's hungry.  She doesn't seem to make this connection.  And her hunger, like so much of her, seems sometimes out of the blue.  She can have eaten a lot already, and still be very hungry.  We have learned to quickly get some food into her if she is starting to escalate.

2.  A shower.  Janey has taught us this one herself.  The most common thing she asks for when upset is a shower.  The warm water streaming down seems to calm her immensely.  We let her stay in the shower as long as she wants.  I sit in the bathroom with her and read.  The one has the added benefit of getting her away from the rest of the family, so they can have a little break.

3.  Turning everything off.  If Janey watching TV, or if music is playing anyplace, we turn it off.  We often have to unplug the TV so Janey doesn't turn it back on.  We stop talking much, we turn off lights, we make the surroundings as quiet and calm as possible, to avoid any external triggers.

4.  Covering Janey with blankets.  If I can, I get Janey on the bed and cover her up.  Like many kids with autism, the pressure of the blankets seems to help a good deal.

5.  Repetitive soothing touch and sound.  I will often massage Janey's feet with lotion.  While doing this, I'll sing a song, something mellow and quiet, over and over.  Sometimes it's just a made-up song, like "Massage, massage, massage Janey's feet..."

6.  Backing away.  If Janey is still upset after all this, I've learned lately I need to just get out of her way.  I don't want to be hit or bitten or have my hair pulled, for several reasons.  One is of course that I don't like being hurt, but also, if I am hurt, I naturally react in a way that escalates the whole situation.  So sometimes, I just walk away, and let Janey rage.  If she follows me, I keep moving.

7.  Nothing.  When Janey is truly agitated, nothing helps.  Nothing at all.  All that can be done is to wait it out, sometimes until she falls asleep.  Doing anything at all makes things worse.  So sometimes, we just stand back and do whatever we can do with screaming and flailing going on the background.  This is the hardest one for me to do.  I want to help Janey, but sometimes, there is no help.  She needs to just get through the episode on her own.  Of course, we step in to keep her safe when necessary, but otherwise, we just wait for the storm to pass.

As you might guess, it's been a long morning here.  I have used all these techniques and am now, in writing this, on step 7.  It seems to be working a bit.  Janey is watching nursery rhyme videos on YouTube, no longer screaming or hitting me.  Merry Christmas Eve Eve.

A good day, then a bad day

Saturday was the good day.  Janey was happy pretty much from morning to night.  We hadn't had a day like that in several months.  It was wonderful.  She was cheerful, talkative and laughing---a real laugh, not the manic strange laugh she sometimes does.  She interacted so nicely with both brothers, and she sang and danced and was a joy.

During the day, Tony and I did a lot of knocking on wood and reminding each other not to think a corner had turned.  We enjoyed the day very, very much as it happened, but we tried not to get our hopes up.  I think we did, though.  Janey had been on the new mood stablizer medication for two days, two doses, and even though she's on a very low dose to start, we somehow hoped it was doing something, making her feel better.  Maybe it was.  But...

Today, Sunday, was awful.  It was right back to the typical bad days of the past few months.  Janey screamed a great deal, smashed her fists on the TV and the computer when they annoyed her, tried to hit us (we are getting better at being guarded and didn't get badly hit) and cried for hours.  It was a very tiring day.  It felt more discouraging than other bad days recently, almost, because there had been that little bit of hope.

Of course, I am trying to say the right things to myself, that things don't change instantly, that just because today was a setback doesn't mean the new medication might not be helping, that even "normal" kids have ups and downs---all those things I should think.  But I don't think I'm as good as bouncing back as I used to be.  The events lately make me see how bad things can get, and how little the medical or psychiatric profession can really do.

I've decided to give myself next week, Christmas week, off from anything autism related that isn't strictly about daily Janey care.  Most especially, I'm going to not think about the Mass Health debacle.  You might remember how when I gave our health plan Janey's new Mass Health card (state insurance for low income or disabled people), they freaked out and said it was the wrong kind.  After a lot of research and talking to an expert who luckily was holding a meeting at Janey's school, I think I figured out what happened.  When Tony talked to a financial person at Children's Hospital, he told her our income, and she said that when we first applied, we would be refused, and then we would have to do a special appeal that gave the details of Janey's disability, so she would get a special type of Mass Health for children with disabilities.  However, I don't think the woman realized we have 3 kids, not 1, and our income was actually within a range where we qualified for state help without Janey having any disability.  So the insurance was approved for her with that initial application, but approved as a type that is used as a primary insurance, not the special disability kind.

If the above paragraph confuses you, you are not alone.  I guess fixing this kind of mix-up is extremely tough, and requires all kinds of sending papers here and there and somehow getting through to the right people.  I wish I had gone with my feelings over the past 10 years and never applied.  The expert also told me that both insurances, our federal Blue Cross and Mass Health, don't cover special autism services anyway.  This is despite the fact there is a federal mandate for insurances to cover autism services, but there are many, many exceptions, and strangely enough, federal Blue Cross is one of them.  So there you go.  It's another example of what might be perceived by those outside of the autism world as "all those services out there you can get", which is reality either don't exist or are not accessible.

Despite the discouraged tone of this post, I am doing fairly well.  I am not dreading Christmas---I am actually feeling a bit of spirit, more than in the past few years.  Maybe it's because, as the song says, "I need a little Christmas"  Maybe it's because so many people have been so kind to me over the past year, and even when things are this tough, that has given me an inner resolve, an inner core that I am able to reach to most of the time.  Maybe it's the music, which even on Janey's worst days is one of her favorite things in the world.

Here's a picture of Janey's smile, from yesterday.  Her beautiful smile, even on days when I don't see it, is another reason I keep getting up on the morning.

The Month That Wasn't

It's been a month today since the day that I got the call from Janey's school, the call that they were calling an ambulance to take her to the hospital.  It's been a month that in many ways, I would like to erase from my life.  In other ways, it's been an important month---in some ways, even a good month.  But I think it's fair to say I hope I never have another month like this one.

Here's a little synopsis of the month.  Janey's behavior, which had been escalating for a week or so, got even worse on November 14th.  I rode with her as she went by ambulance to Children's Hospital in Boston.  In the emergency room, she was assessed and it was determined she needed hospitalization in a psych ward for children.  There were no appropriate placements available right way, so we spent 6 days at Children's as boarders, waiting for a placement.  We got one after those 6 days at Bradley Hospital in Providence, and Janey was there for 18 days.  She came home after that, when they felt she was stable enough to leave.

Those are the bare facts, stripped of emotion.  Here's some of the emotion.  The stay at Children's was hell.  I can never think of another word to use for it.  The 28 or so hours in the emergency room were the deepest, darkest levels of hell, and the next 5 days in a room on a kidney transplant ward were regular hell.  Janey wasn't able to leave the room, was periodically attacking the nurses, the sitters who sat in the room and me.  She screamed extremely often, asked frantically for one thing after another we couldn't do, and slept poorly.  I don't think I'd survive another 6 days like those.  The stay at Bradley was in some ways a relief and in other ways not.  The drive to Providence was often very, very tough, both in terms of traffic and in terms of giving us time to think what we were doing---visiting our precious daughter in a locked psych ward.  The visits with her were both wonderful, because we missed her so much, but also awful, because in what was a theme for the month, we were not supposed to leave the room with her, and she would quickly become bored of us and restless.  It would become a situation where either we saw her for far shorter than we wished or we risked setting her off into a spiral of a meltdown.  Having her home, although joyous, led us to see nothing had really changed.  Janey has been often very unhappy the 5 days since she's been home, although there have been good times too.  A few days ago, she attacked my father, in a frightening repeat of what started this whole time.

What has been good?  Well, we got a letter yesterday saying we had been approved for state supplemental insurance for Janey, so going forward, we might be qualified for help with therapy and things like pull-ups.  I need to work on getting that all set up, but it's something we probably should have done years ago.  Janey is off two of the three medications she had been taking, and we are seeing some improvement in her talking, which leads to the upsetting thought that she may have been overmedicated for a while, but in trying to be positive, also means she might be no longer overmedicated.  And the greatest good part--the absolutely overwhelming and incredible support, in so very many ways, from all of you, all my friends who read this blog---those I know in person and those I know through the magic of the internet.  You are a wonderful bunch of people, and you let me live through this.  I mean that with all of my heart.

What are our fears?  We have many fears.  The biggest is that Janey is going back to school tomorrow, if everything goes well.  Her school has been wonderful, and they are eager to have her back, but we truly feel everything might repeat itself.  I have no confidence Janey is going to be able to not repeat the behaviors that started all this.  We have realized places like Bradley are not set up to change the future.  They are set up to deal with children in crisis, during the crisis, and they do a outstanding job with that.  But they are not set up to change the child.  I am not sure it's possible to do that, to be fair to them.  I don't think I'll ever relax again while Janey is at school.  I will always be waiting for another call like that horrible one a month ago, a call saying she is out of control and they think she should be in the hospital.

I will close with right now.  Right now, Janey is happy.  She is having bacon that Daddy is making---bacon made by the best father in the world.  We are looking forward to getting a Christmas tree today.  We are together, our older son William will be home from college soon, and we will celebrate Christmas and look toward 2015 with hope.  And that is enough, for right now.

Joy and Lessons

Janey is home, and the overwhelming feeling we have, so far, is joy.  It is wonderful to have her home.  We realized, this past month, what a crucial part of our family she is.  She is our focus, our center, our mission.  Without her, I think all of us felt a little lost.  She is a huge challenge, a huge job, but most of all, a huge joy.

We have, however, learned a few lessons which are tougher to take than the lesson of how we need her.

Janey's release from Bradley was sudden.  Late last week, when both the school and I talked to the hospital, it seemed that her release was not going to be soon.  Then, on Monday, I got a call from the social worker at first asking how our visits were going and then telling me they were planning on releasing her the next day, Tuesday.  I had a huge mix of emotions.  First, happiness, but then, a little confusion and a lot of "what next?"  Yes, she had calmed down.  Yes, her medication had been adjusted.  Yes, the immediate crisis was over.  But most things had not changed.  Janey was still screaming often, biting her arm quite a bit, often upset.  We still had no respite.  We had no new ideas for dealing with Janey, no new plan.  There was not going to be any release meeting.  We didn't speak to the psychiatrist in charge---we had met him only once, at the intake meeting.  Basically, Janey was coming home because her mood had changed.  That is something that has happened at home, without a hospital, many, many times.  We could have done that here.

To play the devil's advocate with myself---we did get some respite.  We had the 18 days with Janey at Bradley, where we were able to sleep all night.  We were able to spend 18 days, when we weren't driving to Providence, doing the kind of things we haven't done for a while---mindless games, mostly.  We probably didn't relax as much as we should have during that time.  We were still in a bit of shock, and we still were thinking about her constantly, and driving to see her often.  But we did have that time.

However, I would have to say overall, I am still quite troubled by the state of our country's mental health treatment for children.  The Children's Hospital time, when Janey was a "boarder", was hell.  I don't have another term for it.  It was hell, hellish.  The Bradley hospital is a lovely place, full of kind people.  I know Janey was treated well there.  But it is an extremely short term solution, and in the end, it changed almost nothing.

There was a moment as Janey was being released when I was signing forms at the nurse's station.  The nurse and the social worker asked me if I had any questions.  I think they could see the look on my face, a look that was that was a mix of concern and something like internal laughter.  Yes, I had questions.  Just where do we go from here?  What I said was "We just wonder if you have some suggestions on dealing with Janey's difficult behaviors at home?" or something along those lines.  The answer was that they had sent a list of their strategies to Janey's school.  The social worker said "You know, we could send a copy to your house if you want!"  Um, yeah.  That might be good.  Although excuse me for saying I don't hold out huge hopes that the list will solve everything.

But I'll end here on a more cheerful note, one more appropriate for this Christmas season.  We HAVE learned something.  We have learned that we are the ones who are the experts on Janey.  It isn't like there are people out there who can tell us how best to help her.  We are the people who know that.  There are places she can go in times of extreme crisis, if we are able to first endure the horrors of boarding.  We have learned that besides that, one of our best allies is the Boston school system---who stood by us during all this, stayed in close touch and showed a huge level of caring for Janey.

And we learned how many wonderful people out there care for Janey---the readers of this blog and the friends we have made through the blog and throughout our lives.  We were blown away, stunned, overwhelmed, by all the thoughts, prayers, support through monetary help and kindness and love and offers to help and notes and emails and just plain love from all of you.  We might feel alone sometimes in dealing with Janey, but we are not alone.  Far from it.  Thank you, from the deepest parts of our hearts.

Angry At Autism

I want to warn people that I think this blog entry will be a little raw.  It's one of those entries I write more for myself than anyone else, just to vent my feelings.

I am feeling angry today, furious really.  Not angry at any person, or institution, or event.  I'm angry at autism.  I think it's fair to say I hate autism.

In response to the arguments I am making in my own head to that statement---saying I hate autism doesn't mean in any way I hate people with autism, hate Janey.  I love Janey more than I can imagine loving anyone on earth.  And it doesn't mean I don't realize that not everyone with autism has a form of it that would stir up hate.  I wish there were different names for different kinds of autism.  There is autism that makes people a little quirky and interesting, autism that is something a person can and often does feel proud to have.  But if they are able to feel that feeling, they don't have Janey's form of autism at all.

I hate autism for what it has done to my daughter.  It took a sweet little girl, a girl that in most ways was developing normally, a girl that more than one person said to me "Well, at least we know she doesn't have AUTISM!" as if the very thought of that outgoing, happy child having autism was something we could almost laugh about, and within a few months, stripped her of her happiness, her ability to communicate anything but the most basic thoughts, her ability to learn...autism came like a thief and somehow, before my eyes, robbed Janey of so very much.

I hate autism for tormenting my beautiful girl.  I hate it for making her bite herself until she has a permanent scar on her arm, for making her scratch herself so badly she sometimes bleeds, for making her scream a scream of what only can be described as agony, over and over and over, for making her cry sometimes for days for no reason she can tell us, for making her perform useless rituals increasingly frequently, for keeping her from sleeping, for doing things to her that if it were a person doing them, would be rightly called torture.

I hate autism for making learning so hard for Janey, for making it that any testing she has ever had shows her to be severely retarded, although I know, when I allow myself to think about it, that there is an amazing mind locked away somewhere in her brain.  I hate it for keeping her from reading, from doing math, from being able pursue her interests in any depth.  I hate it for taking someone with many gifts and talents and making them unable to use those gifts and talents.

I hate autism for taking away so many of childhood's joys from Janey.  I hate it for taking away any real enjoyment of Christmas, or birthdays, or Halloween.  I hate it for taking away slumber parties and playdates and ballet lessons and first dates.

I hate autism for the what it will do in the future.  I hate it for keeping Janey from ever getting a high school diploma, a college degree, a husband, a family, a first apartment on her own, a life apart from her parents.

I hate autism for making our home life so often a living hell.  Janey doesn't make it that way---autism does.  Autism keeps us from vacations, dinners out, visiting friends as a family.  Autism will take away any years Tony and I might have had of a leisurely retirement.  Autism will make me terrified of getting old, of not being on this earth to protect and care for my precious, precious girl.

Maybe I am not supposed to say I hate autism.  Maybe I am not supposed to be angry at it.  But substitute any other name for autism in this post, and imagine NOT hating it, NOT being angry at it.

I love Janey.  I hate autism because I love my daughter.  Janey's wonderful traits, and she has many, are not part of the autism.  They are what the autism has somehow spared.

Tomorrow we have our big, big IEP meeting.  I will write about that, and I will try to be less emotional than I am today.  But for now, I am allowing myself, until Janey gets home and I put aside any emotion to give her the best night I can, to give in to hatred.  Just for today.

Christmas Blues

I know I'm not alone in having a hard time with Christmas.  Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds.  But I'd dare to say it's harder for parents raising autistic kids than it is for most.  I've been feeling it a lot this year---a very lot.  I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way.  I've been trying to figure it out---why especially Christmas?  I think it boils down to the isolation autism brings.

"Christmas is for children".  That's a phrase you hear a lot, and something I believe.  Once you are an adult, your main role is giving a great Christmas to your kids.  But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas?  That is Janey.  I am quite sure I could skip the whole bit and she wouldn't care.  I could not have a single present for her under the tree, and she wouldn't even notice.  I could not have her hang a stocking for Santa, and it wouldn't bother her a bit.  It makes it all feel a little meaningless.  I will still have presents for her and a stocking, of course, but who am I doing it for?  I guess it's for me.  In a way, she might be happier if I DIDN'T give her a present or have Santa come.  She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then.  And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for?  (especially if you aren't very religious, and I am not)

All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes.  It's yet another part of life that autism steals from both Janey and me.  Writing this, I feel sort of petty.  I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot.  So why is it so hard now?  I can't really explain.  Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst.  Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is.   Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life.   But a big part of it is sadness for Janey.  I am sad she can't anticipate Christmas.  I am sad that presents scare and not delight.  I am sad she will almost certainly never have children of her own to give a Christmas to.  I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine.  I am sad for all that Janey will never feel or experience.

It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas.  I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey.  I hope you all have found a way, and that you find joy and peace this year and always.

Strange Attractors

Although Janey will often ignore things that you want her to focus on, once in a while, she is strangely attracted to certain objects.  She will find them wherever they are, and will resist all attempts to keep them away from her.  This year, it was one present under the tree.  It was for Tony, and was wrapped in the same paper as many of the other presents, was a simple box shape, was nothing that stood out in any way.  But as often as I put it back under the tree, she took it out, held it and then moved it to a new place.  She didn't try to open it---she just was drawn to it in the wrapped form.  Today, I realized Tony never opened that present, because by Christmas it was no longer under the tree.  It's no longer anyplace that I can locate.  It's very possible that it wound up in the trash, as sometimes that is a place Janey puts objects she is interested in.  I got a brand new pair of sneakers a few years back that she took a fancy to.  I only wore them once before one of them disappeared, and despite a housewide search, was never seen again.  I think it had that same fate as the present.

Lately Janey has been drawn to my camera.  I tell her "THAT'S A NO!" in a loud voice whenever she gets close to it, but usually if she grabs it, she just holds it.  I had no idea she actually knew how to use it, not until a few minutes ago, when I heard a tell-tale "swoosh" sound it makes to imitate the old time sound of film being advanced.  Janey was standing next to me taking a self-portrait.  I took it away, spoke to her firmly, but couldn't resist seeing what she had taken.  Several of the picture were of her finger firmly pressed against the lens, which is just the reason she can't use the camera, but 3 or 4 were pictures of herself.  That impressed me a little---she knew how to turn on the camera, knew she needed to turn it around to take a picture of herself, and even kind of how to frame the picture.  I might get her her own heavy duty kids camera.  In the meantime, here's a few of the self-portraits...

Christmas night

So Christmas 2012 is almost over.  As is almost always the case on Christmas night, I feel a little let down.  There's such a buildup to Christmas, and it's over so fast.  But it was a very nice one.  We had a great day, and gave the kids more presents than we usually do---we are usually very restrained in that, but I decided this year to put more focus on getting them, especially the boys, things they wanted and needed.  It was fun.  We had a huge amount of special food, a great visit last night with our dear friends for Christmas eve, Janey and I had as much Christmas music all year as can be imagined, and overall, it was a very good Christmas.

The picture is Janey watching the Christmas karaoke VHS we watch every year at our friend's house.  It's kind of a joke with the kids now, as it's very hokey, and has very cheap visuals, and does strange versions of each song, and then once they've done the long, long song, a screen comes up that says "Now everyone sing!" and we sing it all over again.  Lots and lots of laughs, but lots of fun singing together too.  Janey had been napping, and woke up when we were singing, and she was in heaven---it was her dream to wake up to a room of people belting out Christmas music!

Still, with all this being said, there is sadness for me at Christmas.  I don't think it will ever totally go away.  Janey has no real awareness of the holiday traditions.  She doesn't get Santa, she doesn't have any curiousity or interest in her presents, she can't count the days until Christmas, she isn't sad it's over because in most ways she didn't really understand it was here.  She was manic in the night, laughing hysterically for hours, probably because we weren't careful and forgot and let her have lots of chocolate milk, and chocolate and other caffeine is the one solid food connection I've ever found with her---it makes her crazy way out of proportion.  She cried at points today.  We were all exhausted by afternoon, but we couldn't nap, because she had to be watched.  She had pullup issues.  She was, basically, herself.  And she always will be.  She is delightful, sweet, interesting, but she is also autistic and intellectually disabled.  She is never going to get Christmas the way I dream of.  Like so many things, it's my dream, not hers.  It's my sadness, not hers.  But my latest way of thinking is to admit the sadness, and try to move on from it.  It makes me sad that she doesn't understand Christmas.  It makes me very sad.  But Christmas isn't her getting it.  Christmas is, in the words of the Grinch, a little bit more.

A Christmas Present for you!

Here's a present for you, my dear readers!  It's Janey giving you a Christmas Panettone!  For those of you who didn't marry into Italian families, a Panettone is a Christmas type sweet bread, with raisins and glaze.  I am not that huge a fan of them, but they are sort of like fruitcakes or cranberry sauce or candy corns---holiday foods you just have to get whether you like them or not.  Janey is in love with the boxes.  She spent a lot of time yesterday doing very, very rare pretend play with them.  She'd bring a couple boxes (one empty, one still with the bread) over to one of us and hand it to us, then we were supposed to give it back to her and say "Here's a present!  Merry Christmas!", and then she'd take it to someone else.  A pretty basic game, but a great one to see her playing, maybe getting ready to actually open and perhaps even break a smile at some of the presents for her tomorrow.

Merry Christmas to everyone, or Merry other holidays if you don't celebrate Christmas!  I can never be sure how many people actually read this, but it's always amazing and hugely thrilling to me that anyone does.  I appreciate the chance to write here and share my thoughts, and I hope anyone reading this has a wonderful day tomorrow.

Dispatch from the middle of the night

It's 2:15am, and Janey is happily watching Count With Maisy.  She has worked out her own new sleep schedule.  It consists of going to sleep at the earlier possible opportunity, often 6:30pm.  She then wakes around 1am, ready for a party.  We do what we can to get her to sleep, but often give up and put on a video.  She watches and jumps around and periodically makes demands for food, which we turn down, causing her to scream, but not the lengthy hours long scream, just a momentary scream.  Around 2:30 or 3, she drifts back off, to wake again around 6:30am.  It's some good times, I tells ya.

Part of the fun is the time from 5:30pm, when she gets home from afterschool, and 6:30, her new bedtime she's picked.  That is an hour of non-stop crying and eating.  She comes home in a mood and a half.  Tony gives her dinner right away, and more dinner, and more dinner, and some after dinner treats and some dessert.  She stops screaming long enough to eat and demand more to eat.  Then she demands a snuggle with me, by which point we are ready to do anything to stop the crying.  Then she goes to sleep.

This is actually an improvement over a few weeks ago, when she hadn't figured out yet she wanted to go to sleep that early.  Then, she was screaming from when she got home until 8 or so.  Then she was waking at 3 or so to stay up, demanding and angry.

Needless to say, Tony and I are often exhausted during the day.  I feel for him, at work.  He can't arrange his schedule to nap.  I do---working all I can in the morning and early afternoon, and then collapsing for an hour or two.

I've realized lately that Janey has become more of a fan of routines, whether the routines are pleasant or not. For example, the other day I took out her barrettes.  That is usually followed by brushing her hair, but I got distracted and it didn't that time.  Janey hates her hair brushed, hates it very much.  But after a few minutes went by and I hadn't brushed, she brought me the hairbrush and handed it to me.  It was time to brush, like it or not, she seemed to be saying.  So I did, and she screamed as usual.  Then again I got distracted.  She came over again after a bit, and said "Braid?" I hadn't fixed her hair, braided or ponytaled it or whatever, which she also doesn't like but which is the routine.  And so I think the coming home, crying, sleeping early, waking in the night, has become the routine to follow.  Last night in the car home, she even seemed to be planning it.  She said, in a type of speech I've never heard from her before "I say 'I am ANGRY at you, Daddy!'"  She never actually says that to him, just screams, but I guess she was planning the screaming.

So what do we do?  History has showed we wait it out.  That is all that seems to work.  Christmas vacation is coming soon, and that will change the routines,and hopefully break this latest one.  Until then, we are daytime zombies, evening objects of fury, middle of the night monitors.  Life with Janey.

An emotional day

Yesterday, like most Americans, I heard the news about the shooting in Newtown and responded with pure horror.  I just couldn't even quite wrap my mind around it.  I felt numb, sickened, like throwing up.  I sat there blinded and just not ready to admit what had happened.  For some reason, I felt compelled to decorate the Christmas tree.  As I put on the angel and peace and manger ornaments, I cried, with the news on in the background.  I kept thinking of a line from my favorite Christmas carol---"I Heard the Bells"---the line that says

And in despair I bowed my head
“There is no peace on earth,” I said,
“For hate is strong and mocks the song
Of peace on earth, good will to men.”

It can feel that way, a lot of times.  There is evil in the world.  We can't understand it, we can't quite even grasp it.  But it's there.  However, I truly believe there is more good than evil, much more good than evil.  I see it every day, with the people that care for Janey, that love her.  I see it in Janey herself---an innocence that will never go away.  I see it all over.

Of course, my mind went where I wish it hadn't.  What if it had been Janey at that school?  I saw the pictures of children leaving the school in a line, and thought about how Janey would not understand orders to do that, that the noise of bullets (and how sickening to even have to picture this) would scare her, how she would scream if a class was trying to be silent to avoid being shot (and why, why do we even have to think of such things?)  I thought of how she can be confused and overwhelmed by the smallest things, and I cried.

However, I also thought about how Janey will never really understand evil.  I heard advice on talking to your young children about the shooting, and I felt an odd relief that I didn't need to do that.  Janey knows nothing of what happened, and she won't.  Her autism protects her from some of the worst of life.

The day ended on another note, a very happy one.  William got his first college acceptance letter!  It was to Clark University.  He is applying to 13 other schools, and so hopefully this is the first of more, but the first letter is a huge deal.  We hugged him and cried for happiness.  I remembered the little boy that long ago carried a (wrong) diagnosis of autism, the boy who struggled for years, and who was helped beyond measure by the love of good teachers and (I hope) our love of him, and his own strength.  It felt like another reason to hope---that love and caring can work.  I am so proud of him.

And we go on, trying to understand a crazy world.  We hold our children and wish for them a life free of hate and evil, a life where love triumphs.