Thursday, December 31, 2015

Goodbye to 2015

In some ways, I'm fairly happy to say goodbye to 2015.  However, that's mostly based on just one month of it, from mid May until mid June, with Janey's burst appendix and long hospitalization.  The rest of the year was...fair to middling.  In some ways, if you leave out the horrible month, it wasn't a bad year.  Thinking back, most of the big changes were changes in our attitudes and approaches to Janey, not really external changes.

After Janey's time in the hospital, she was very weak.  The most important thing was to get her healthy, get her eating and drinking and moving around and well.  When that happens, when you are stripped down to the basics of life, I think some things become clear.  We were not thinking about things like establishing firm routines, or working on communication, or building skills.  We were working on keeping Janey from winding up back in the hospital.  We were helping her gain back the huge amount of weight she'd lost.  We were watching her for infections.  The autism became an footnote, a minor concern.

Keeping Janey happy, helping her heal, we did all we could to minimize the time that Janey spent crying or upset.  And we realized something---that if we kept Janey happy as much as possible, life was easier for all of us.  If we did the little things she liked, we spent far less time trying to calm her down, trying to fix an hour or day that had gone awry.  With that realization, the last half of 2015 featured a lot of good days.

It seems so simple---keep her happy.  But it took a change in our attitude.  It wasn't like we didn't always want her to be happy, but until this year, I think we felt that it was important to make our stands, to not "give in" whenever possible. We aren't terribly strict parents, but we were always fairly firm about no meaning no, about keeping things fair and not bending our plans or routines because of tantrums or anger or begging.  And to some extent, that is how we were parenting Janey.  It had worked pretty well with the boys.  But, as we came to realize, Janey is different.

And so, we say yes to Janey much more often than no, now.  We do things pre-emptively.  If she wants a car ride, unless it's impossible, we give her one.  If she doesn't like music that is playing, we change it.  If she asks for something to eat, and we have the food, we make it.  If she wants a shower, even though she's just had a shower, I give her one.  If she wants us to snuggle her, we snuggle her.

Of course, if what Janey wants is to bite us, or throw food on the floor, or break things, or not wear shoes to school, or any number of other things along those lines, we are still firm.  But we've realized---if we start with "yes" as our default answer to the limited amount of wants and wishes Janey can express, there is far less biting or breaking or throwing.

The parenting books, the common wisdom---those would tell you that "giving in" to a child, doing what they want, will create a brat.  And I think that is true, with a typical child.  But Janey isn't typical.  She isn't able to think about WHY we say no or yes.  She doesn't understand the reasons for no, and she doesn't understand the reasons for yes, either.  So she doesn't project, doesn't think "Gee, I can get away with anything!  I just have to ask!"  any more than saying no makes her think "Wow, they really mean it!  I might as well realize I'm just not going to get what I want by begging!"  She understands happy and she understands sad, and she likes happy better.  We like her happy better.  It's pretty much as simple as that.

So---I will sign off for 2015.  I hope that the new year brings all of you happiness.  I'm off to drink a cup of kindness yet, for Auld Lang Syne.  I'll raise a glass to all of you, with love.

Tuesday, December 29, 2015

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.

Sunday, December 20, 2015

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.

Wednesday, December 16, 2015

Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist
First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

Friday, December 11, 2015

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.




Wednesday, December 2, 2015

On loving the real Janey, not the potential or perfect Janey

For a week or so now, I've been feeling frustrated and upset by a lot of what I see out there in the world of the internet about autism.  I haven't been able to quite put my finger on what has been bothering me until now.

This article somehow cleared my mental clutter a bit and allowed me to put voice (internally and hopefully now to you!) to what I've been troubled by.  It's been a combination of themes that have upset me.  These themes, on their own, are well-meant and progressive, but they combined to send a message about severe autism, low-functioning autism, non-or-low verbal autism, whatever you want to call it (and having to be careful what you call it is another issue).  The message they send is "People with severe autism are not valuable or worth helping just the way they are"

One thing that is said a lot about Janey's type of autism is "Assume competence".  There's a lot I like about that idea, but I realize now there's also a lot about it that can lead to the message above being sent.  Janey isn't a valuable person because of something we have to assume, something that might or might not exist in her.  She's not valuable because she might understand more than she lets on, she might be reading without me knowing it, she might be a musical genius in disguise, she might have a higher IQ than she can show by testing.  She's valuable EXACTLY HOW SHE IS AND APPEARS.  She is valuable even if she never, ever progresses beyond where she is right now.  She's valuable without having to assume anything.

Another trend I see here and there lately is that of never saying anything that isn't positive about parenting autistic kids.  There's sometimes an implication included that if you don't speak only of the wonder and joy of raising your child with autism, you are lacking as a parent, you don't love them, or, at the very least, you are leaving a trail that they might someday read and feel upset about.  Well, I'm here to say that anyone who never has found anything negative about parenting ANY child is at the very least kind of clueless, and at the very most kind of, well, lying.  I love all three of my kids with an intensity that almost scares me.  But there were moments in parenting all three of them that were horrible.  There were scary moments, frustrating moments, moments I felt angry, moments I felt in despair.  In setting aside kids with autism as somehow being different than that, somehow being incapable of provoking any feelings but pride and wonder and joy---that seems to me to be again saying they are only valuable as some kind of fairy tale innocent, some kind of otherworldly being.  Janey is valuable for who she is, exactly how she really is.  I don't have to be careful with every word not to break a bubble of illusion around her, because I love the real Janey.

In so many areas, the thoughts and beliefs of a culture change like a slow-swinging pendulum.  In the past, a child like Janey would be seen as a tragedy, someone to "put away" as to not ruin the lives of the parents and siblings.  I am so thankful that is not the thinking now.  But we have swung to the other end of the line, where Janey and children like her are full of amazing potential and a glowing beacon of perfection in a fallen world.  That leaves parents like us, parents terrified about the future, living a life that is hugely full of stress, getting by from day to day, left feeling like we are somehow at fault, somehow seen as not accepting or loving our children enough.  In my eyes, being honest about children like Janey, the good, the bad, the wonderful, the terrifyingly tough---to me anyway, that is love.  That is love of a real child, not a symbol or a potential or a myth.  I love Janey.  I love my low-functioning, severely autistic child.  I love her, the actual her, the truth of her.  And I know there are many, many other parents like me, and many, many other children like Janey.  I am going to try to keep being brave enough and honest enough to honor Janey by telling the story she can't---the story of a little girl, who, like every child in the world, deserves love exactly how she is.