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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.

Monday, November 30, 2015

"Take Care of Yourself"

I've been told to take care of myself a lot.  It's good advice.  I've been told the story about how on airplanes, they always tell you to put your own oxygen on first before helping your child.  Yes---that is true.  But the simple fact is, with a child with autism, it can be very, very hard to take care of yourself.

I've had some horrible jaw pain off and on for about a month now.  I keep hoping it will go away, as pains usually do, but it hasn't.  I'm sure it's nothing serious, but it's been bad enough today that finally tomorrow morning I have a doctor's appointment.  I wanted one sooner, like today.  But by the time that around 10 am I realized the pain was enough that I really finally needed to give in and get some help, it was too late.  Too late because by the time I could get an appointment, I'd be too late to greet Janey's bus.

Now, that's not just an autism problem.  Of course, everyone needs to be home for their kid's bus.  However, what hit me today is that most people would have options if it were just impossible a certain day.  They would have people around that could care for their child.  The child might be in after-school.  And at 11, Janey would probably still be a bit young, but by 12 or so, she could come home alone even if really need be.  I had none of those options.  Nobody can watch Janey but Tony or me.  It's not that they wouldn't want to---it's that they honestly are not able to do it.  She is too tough.  The after school program has a ratio of students to kids that effectively excludes Janey (and I know the law might say they HAVE to provide for her, but what the law says and what can be done without a long, expensive fight are not the same thing).  She certainly can't stay alone, ever.  The only option would be having Tony come home early.  Because of all the time Janey spent in hospitals the past year, he doesn't exactly have a ton of sick leave left, so that is a total last resort.  And so---I couldn't make the appointment for today.

This is a little example of something that comes up over and over.  I appreciate people telling me to take care of myself.  It's a very good reminder that I should rest when I have a chance, and not feel guilty about it.  Sometimes, though, taking care of myself just isn't possible.  Even making the call today to get the appointment involved talking over Janey's screaming, as she was upset I was on the phone.  A lot of times feel like that.  If I take care of myself, I am not taking care of Janey.  As if to illustrate, as I tried to edit this paragraph to better say what I want to say, Janey asked me to cuddle her.  I tried briefly to put her off, and she started screaming, biting herself and by the time a minute was up, she was hysterical.  Ignoring her is not an option.

And I am one of the lucky ones.  I have a husband who does more than his fair share.  I have school, which allows me to nap when I haven't slept and to do dishes and laundry. There are people who are single parenting, or have adult children with autism no longer in school, or have other young children.  I won't say I don't know how they do it, because I hate that phrase.  But I know their lives are far harder than mine is.  And mine, to be honest, is fairly hard at times.

I asked on my Facebook page that is a companion to this blog about what respite people have.  I am going to write more about the answers (without names, of course!) in a future blog entry.  But I can already see that countries other than the US do a MUCH better job than we do here.  Here, it seems much depends on the state, or the county, or city, or even part of the city you live in.  It depends on figuring out the complicated systems.  And even with work and determination and knowledge, there is often just no help available.  That is a disgrace.  I am not political.  I am not blaming any party or ideology.  Autism doesn't play politics.  This is something that is going to affect EVERYONE.  If the rate of autism is what it's said to be, then there are going to be a very lot of families that just can't keep functioning, keep working, keep paying taxes, and it's pretty foolish to not spend the amount needed to give desperate families a little time for such luxuries as doctors appointments and sleep.

Thursday, November 26, 2015

Thanksgiving 2015

Last year, Janey spent Thanksgiving at Bradley Hospital, hospitalized for her increasingly agitated and aggressive behavior.  This year, she was home.  That alone was something to feel very thankful for.

There's a lot else to feel thankful for, of course.  There's my husband and sons, three amazing, brilliant, kind and interesting people.  There is Janey herself, my beautiful, fascinating daughter.  There's my extended family.  There's my friends, including all of you.  There's the fact that we have enough to eat, and a roof over our heads, and don't go to bed at night in fear.  That puts us far up on the things to be thankful for scale compared to so many in the world.  There's the many other things that make life worthwhile, for me anyway---books, cats, Scrabble, music, coffee---all of life's little pleasures that really aren't that little in terms of the pleasure they bring.  And there's just the fact we are all here, seeing another Thanksgiving Day.

It wasn't an easy day, really.  The thing about autism is that it never, ever takes a holiday or vacation.  It is with Janey always.  I wish so much she could have a day off from it now and then (and that we could, too)  The 2015 version of Janey has a hair-trigger.  She gets instantly, overwhelmingly upset over things she doesn't like, and there's a long list of things she doesn't like.  The anger, though, doesn't last a long time.  Within five or so minutes, she is usually not screaming.  But the screams are a daily, or pretty much really an hourly, occurrence.  They make it very hard to relax, ever.  We had our big meal upstairs with my brother-in-law.  The food was good, the conversation was good, but Janey was unhappy.  She screamed and flung clothes around and was generally extremely unhappy.  We were determined to eat anyway, together, something that I must admit doesn't get done a lot with our family.  But as soon as we finished, before dessert, I took her downstairs.  There is only so much that we can make her endure, and, honestly, endure ourselves.

Autism is our reality.  It's a huge, huge, huge part of our lives.  And I am not thankful for that.  As I think I've said before, I am hugely thankful for PEOPLE with autism, such as Janey.  But I am not thankful for Janey's autism.  I very much understand it when other people ARE thankful for their autism, or their children's autism.  But Janey's particular breed of autism takes away far, far, far more from her life than it gives her.  She is so unhappy so often.  She is hurting, and not just mentally---she bites her arm constantly, and not lightly.  She is unable to participate in so much of life.  It would be cruel for me to say I'm thankful for what autism has brought into our lives---the devoted teachers, the wonderful friends, the fascinating glimpses into Janey's unusual mind.  I AM thankful for all those things, but it's like saying "It's okay that Janey has to suffer so much, because it has brought us some very good things"  

So I will say to all of you reading this---you are a remarkable bunch of people.  I'm glad I know you.  But I wish we could have met under different circumstances.  

Happy Thanksgiving.

Monday, November 23, 2015

Janey's Mysterious Mind

If I had one wish, I would put aside the regular wishes like a billion dollars or unlimited more wishes (well, maybe not that one!) and wish to be able to be inside Janey's mind for just one day.  If I could see how her mind really worked, what the set-up is in there, what she understands and what she doesn't, I think I could be a better parent to her.

I have a few examples from recent days of my glimpses into Janey's thinking and abilities.  They are interesting, but like blurred photos or an book with some pages missing, they give me only a hint of what is whirling up there in her mind.

One of the things I'd most like to see is how she arranges memories.  I have a feeling they are like YouTube clips, little stored segments that come up when the right keyword is entered in.  The other day, I put a Kermit the Frog top on Janey.  I said "Look at this shirt!  There's a picture of Kermit the...." waiting to see if she would finish the phrase.  She didn't at first, and I let it go, but a minute later, she said "Kermit the Frog!" Then she started reciting, word for word, a skit from Sesame Street, something on a video I'm quite sure she hasn't seen in years, as we lost it, where the Count gets a job as an elevator operator and Kermit gets on the elevator.  She knew all the lines, as she usually does.  I picture her brain getting the Kermit keyword and bringing up the clip, stored in complete form.  It's an interesting form of memory, but it doesn't allow for easy answering of questions.  She knows who Kermit is, but unless I'd known why she was talking about the Count, I wouldn't have gotten what she was saying.

Other times, Janey uses the clips to try to communicate.  This evening, she took a shower and I was drying her as she got out.  As it wasn't a washing hair shower (she just likes to take showers a lot, and sometimes I let her just take one to enjoy the warm water), her hair wasn't really wet, and I wasn't drying it.  That wasn't the usual routine, and Janey had the look of wanting to tell me something.  Suddenly, she said "Yeah, Sister!" and then started singing "I'm gonna wash that man right out of my hair!"  She likes that song, and she's seen the clip from South Pacific, where the star dries her hair with a towel.  She was telling me that I needed to dry her hair.  I pictured her doing something like a Google Image search, finding someone doing what she wanted doing, and then using her memory to try to give me that image.  It's complex and interesting, but it's not practical in a lot of situations.

Although long periods can go by without Janey showing her hand, I do think somewhere in her mind, in some conditions, she can read.  This morning, Tony put on The Pink Panther on YouTube for her when she asked for it.  We've often noticed that when we aren't looking, suddenly the computer is on something totally different than what we put it on.  We assume usually she is clicking on the little suggested videos that come up next to the video she is watching, but sometimes, that seems unlikely.  Today, I was watching her when she didn't realize I was, and I saw something surprising.  She closed YouTube, then reopened the browser and went to the bookmarks (she could have done this right from YouTube, but she is very tidy on the internet and often just goes around the house closing computer windows)  The list of bookmarks was quite long, and she scrolled down it and found what I believe she was looking for, Weird Al's "White and Nerdy"  She clicked on it and happily watched it, then was able to click on some other Weird Al stuff that came up on the sides.  I don't know how she could tell that particular bookmark was what it was without reading it.  When she saw I was watching her, she gave me a look that was a little sheepish.  I said "You can read, can't you?"  Of course, no answer.

I was thinking this all through today, and feeling a little frustrated.  Why can't Janey put her amazing memory and her hidden abilities to use?  Then it occurred to me---she does.  She doesn't do so in the way we might want, but she does.  She enjoyed remembering the Kermit video, she managed to tell me what she wanted me to do with her hair, she got to watch the Weird Al video she wanted.  When I push for more, the times I have, she either simply acts like she doesn't know what I am talking about or she gets actively upset.  So---do I accept she's doing what she wants to do?  Or do I call her bluff and try to make her use her abilities to be more like the rest of us?  I don't know the answer to that.

Thursday, November 19, 2015

What Do You Do With The Mad That You Feel?

I loved Mister Rogers.  In fact, I loved him so much that (and I don't think he'll mind me telling you this) I named my son Frederick in his honor.  I wrote to Mister Rogers about this, and got back a wonderful letter and signed picture.  They are one of our family's most prized possessions, and they will of course be Freddy's some day.  So today, I wasn't surprised when one of Mister Rogers' songs came into my mind when thinking about my tough morning with Janey.  Here's a link to it (link)

The question in the title of the song is what I've been asking myself about Janey.  What CAN she do about the mad that she feels when she feels so mad she can bite?

This morning, Janey was resistant to getting dressed.  I think it was because she had to go to the bathroom, but didn't tell me.  Once her clothes were on, she wet them, and so needed a new set of clothes.  Her bus comes very early, about 6:20 am.  It was about 6:15 then, and I had to hustle to get her new outfit on.  She was playing with her iPad.  I told her to put it down and I would dress her.  She ignored me.  I asked her again, and again, was ignored.  So I took it away and told her to stand up to get dressed.  She was furious.  And, in an instant, lunged at me, trying to bite me and succeeding in pulling my hair very hard.

I was thinking about the whole incident a lot today.  Up until the lunging, and aside from the clothes getting wet, it was not unlike many mornings with my boys when they were young.  Morning often involve struggling to get kids ready, kids getting involved in something else at the wrong time, kids ignoring their parents, parents having to take away whatever is occupying the kid, the kid getting annoyed and angry.

That's where I think it gets tough for Janey.  What DOES she do with the mad that she feels?  She doesn't have the verbal skills to tell me how she feels.  She doesn't have the self-control to just simmer internally.  She doesn't have the understanding of time to realize that yes, we needed to hurry.  She saw it simply as me taking something she wanted to have, and she was angry.  Very angry, as she doesn't normally lash out like that, and hasn't for a good long time.  But as the song said, she was so mad she could bite.  And what COULD she do with that?

That's what I need to figure out.  That's what I need to help her with. And I honestly don't know what the answer is.  I always explain why I'm doing things, and although I don't remember my exact words, I'm sure I said something like "Janey, you need to put that down.  We need to get dressed for school.  The bus will be here soon"  And she DOES have the understanding of phrases like that.  She can follow rather complex directions, and I am quite sure she understands enough to know what I was saying.  But so do typical kids, and still, they don't always do what they are told.  Of course they don't.  And of course she's not always going to.  I wouldn't want her to be a robot, immediately following orders.

If it had been the boys in that situation at that age, I can well picture what they'd say, something like "I KNOW I have to get ready!  I'm going to be ready in time!  Just let me finish watching this one thing!  It's very important to me!"  And I can picture my answer back "You can watch it after school.  There just isn't time right now" If they were mad, they would let me know, and if I were annoyed, I would let them know.  But with Janey, that level of dialogue is not something she can do.

I don't like to write about Janey being aggressive.  I hate to write about it.  But I am, because I've been told by so many people that they are dealing with the same issues, and many of them have said it helps to know they aren't the only ones.  And I like to live in reality.  I would like to only write about the wonderful parts of Janey, or the progress we are making.  But the fact is, raising ANY kids involves some conflict, some anger, some tough moments.  If we pretend that isn't the case with our kids with autism, well---it's not reality.

I need to work on how to help Janey with anger.  I don't wish away her anger.  It's a normal part of her.  As Mister Rogers says, I will say to Janey (and William and Freddy)---"I love
you just the way you are"  And I will do all I can to help you find your way in this world, and to figure out what to do with the mad that you feel.

Wednesday, November 18, 2015

Kind People

I am not sure why it is, but lately, I have found people are being extremely kind to Janey, and to us when we are with her.  It's not that people were ever usually mean, but this is a new level of kind, a heartwarming going out of their way type of kind.  It might be that people are more aware overall of autism, and so know what is going on with Janey.  It also might be that as she gets close to an adult size and height, it's completely obvious she has fairly severe special needs.  People who might have in the past thought she was just a kid acting out or being silly now can see very quickly that's not the case.  Whatever it is, I'm glad of it, and last night was a wonderful example of what I've been seeing.

We had to take Janey for a special x-ray to see if she has scoliosis.  She has a little bend at the shoulders, and has for a while.  I hope very much she doesn't have it, and it's just something from growing fast and from having abdominal surgery, but we need to have it checked out.  We had put off getting the x-ray for a while, because Janey has developed a huge fear of medical facilities.  After her tough (but good) checkup recently, we had to go back to the same building to pick up new glasses for me, and Janey, as soon as she saw where we were, started screaming hysterically.  We had to reassure her she didn't even  have to get out of the car, but she didn't totally relax until we were long gone form the place.

Last night we were at a different clinic, but Janey knew it was a medical place.  She was very, very upset.  In the waiting area for x-rays, there was just one other mother and child, but the wait was very long.  We had been there half an hour without seeing anyone come out to get people.  Janey had been screaming almost the whole time, lashing out, trying to grab my soda and throw it around, asking over and over and over to go for a ride in the car---it was very tough.  Finally, the technician came out, and I saw why it was taking so long.  I am not exaggerating when I say he looked to be about 95 years old.  I've never seen an older looking person still working.  I am glad he can still work, and I bet he's good at what he does, but he was VERY slow.  It took him a long time just to walk out into the waiting area.  I was dreading how long it would take him to help the mother and son there before us.

Then, the mother did something incredibly nice.  She went up to him and said "Please take that girl named Jane in first.  We can wait"  I almost instantly started crying, from the sheer kindness and thoughtfulness of her gesture.  I thanked her over and over.  She shrugged it off, as I have noticed most truly kind people do, and said she had taught kids with special needs and understood what it was like.

It took the technician about half an hour to do the one x-ray Janey needed, which thankfully, she stood still for, so it didn't need to be redone.  As we went back out to the lobby, I asked Janey to say thank you to the kind mother, and she did.  We thanked her once again and left feeling positive after an experience that could have otherwise been a nightmare.

I hope very much Janey doesn't have scoliosis.  It will be very tough if she does.  But like so many things, it will be made easier by the kindness of others.  The world is full of good people---many more good people than less good ones.  And I am very grateful to them all.

Monday, November 16, 2015

The divide

The anniversary weekend of Janey's breakdown last year was overall good---compared to a year ago, it was wonderful.  Most of the time, Janey was cheerful, and when she wasn't, we were able to find ways to make her happy again, pretty much.  However, because that's just how I am, I guess, I'm feeling kind of discouraged today.

A few incidents this weekend are what's on my mind.  Together, they illustrate the difficulties Janey has in learning and we have in knowing how to help her learn.

The first was a "diaper incident" of the worst kind.  I won't get into the details, but you can imagine.  It required an emergency shower, lots of laundry and an hour of floor cleaning.  It was the worst one in years, and it was depressing.

Janey knows how to use the toilet.  And she does use the toilet, when she feels like it.  She can sometimes go for a couple days and use it almost all the time.  But when she doesn't feel like using it, she doesn't.  And there seems to be no earthy way to convince her that she needs to use it ALL the time.  I read a book once about toileting training kids on the autistic spectrum, and I get annoyed every time I think of it.  The main thrust of it was to find what truly motivates your child, and then use the heck out of it to lure them to use the toilet.  Nothing motivates Janey that much.  And I honestly think sometimes she just isn't aware enough of her own body to use the toilet.  If she didn't let on that her appendix had burst, how is she expected to always know she needs to use the bathroom?  That where the divide is---the divide between what we want and reality, the divide created by lack of motivation and lack of understanding.

The other incident, while seemingly small, has been bothering me a lot.  Janey wanted to go for a ride in the car.  We had taken her already that day for two rides in the car, long ones.  It was evening, we were tired, the Patriots were on, there just wasn't going to be another car ride that night.  We told Janey that, but she kept trying.  And trying in non-screaming ways.  I think she felt somehow there was a key that would unlock the ride, something we weren't telling her but that she was determined to figure out.  First, she tried to dress herself.  She often does this, and leaves out major pieces, like all the clothes besides shoes.  When we still said no, she went and found a scarf, a scarf she hasn't worn since last winter.  She presented it to us, saying "This is your scarf!" and seeming to think maybe THAT was what we'd been looking for.

When we still weren't taking her, Janey came over and pointed to herself, and said "MY NAME IS JANE" in a very rehearsed way.  Then she said "Go for a car ride!" with confidence that she'd get the ride, finally.  I am quite sure she was demonstrating a skill that is something worked on in ABA therapy.  She had decided we were looking for her to work for the ride, as at school they have her work for rewards.

Somehow, it's a lot harder for me to see Janey trying very hard to figure out what we want than it is to just have her screaming. It's the divide again.  There is not a way I have found to explain to Janey why she can't do or have something she wants when she wants it.  I am saying to myself here "well, tough.  That's a lesson we all have to learn.  Sometimes the answer is just no"  But if you never, ever understand WHY the answer is no, the world must seem like an arbitrary and confusing place.

So much of what we try to do as parents is based on helping kids to understand the world---why we use a toilet, why we don't go for twenty car rides a day.  But with Janey, her cognitive issues leave many things impossible to explain.  Of course I explain anyway, with the meme of "assuming competence" in my mind.  But she doesn't understand much of it. I can't fix that.  She can't fix that.  We keep trying, but there are some walls, some divides, we aren't going to cross.

Friday, November 13, 2015

A Year Later

I didn't sleep well last night.  I kept waking up and having flashback type memories.  I've always heard the anniversaries of events can bring them back vividly, and I guess it's true.  It was a year ago tomorrow that Janey was taken to the emergency room from her school by ambulance, the Friday of Veteran's Day week---like today.  She was in a state of agitation such that she was biting, lashing out, screaming non-stop, taking off her clothes, flinging things around---it was a nightmare.  She stayed 6 days at Children's Hospital as a boarder, waiting for a place at a psychiatric hospital, and then 19 days at Bradley Hospital in Rhode Island (as most of you already know).

Of all the memories of that horrible time, the most vivid one, the one that kept coming back last night, took place the morning after the first night in the ER.  Janey had slept very little.  She had no clean clothes---Tony had gone home to get some and hopefully get a little bit of sleep.  I asked if there were any scrubs or anything she could wear---thinking a children's ER sure might have something.  They gave me, to go with the hospital top, a pair of pants that were about a child's size 2 and a Depends style pullup that would have fit a men's XXL.  Janey wouldn't keep them on.  We were in a tiny room, split in half by a pull-down metal wall that covered all the "medical" parts of the room, so we had only a cot on a bare, dirty floor---absolutely no room to move.  We were required to leave the door open, so an eye could be kept on Janey.  We were right by a busy desk.  Janey wanted out.  She kept taking off the ill-fitting clothes and trying to run down the hall.  As I tried to stop her, she bit me on the hand, very hard.  Then she grabbed some chocolate milk and flung it around the room, and tried to break the tray it was on.

The room was suddenly filled with people---probably 10 people, including two cops.  A nurse pulled me into the hall and told me I had to go elsewhere, that I was the focus of Janey's anger and I needed to not get hurt more.  I was taken to a small meeting-type room.  Another nurse brought me some ice for my hand, and some tea and toast.  I sat there, stunned.  It felt impossible that this all was actually happening.  A few minutes later, a third nurse came in and asked me "How does Jane usually react to Haldol?"  Haldol?  Wasn't that what they give violent criminals on TV shows to sedate them?  Why would Janey have ever had Haldol?  I said blankly she had never had Haldol.  The nurse looked skeptical and left.  And I sat there, feeling that my life had changed into something I didn't recognize.

That sequence, that scene, is what kept me awake.  It still seems unbelievable, like something that could not possibly have happened.  But it did.

I could write for hours about the past year, a year in which we spent far too much time in hospitals.  I have a lot brewing in my head about the difference between treatment in different hospitals, and treatment when you are there for a psychiatric reason and for a medical reason.  But I will save that, and say only two more things.

One is that a year later, Janey is doing well.  We are in probably the longest stretch even without any tough times that have lasted more than a day.  I think the changes are due to both a change in medications and a change in our parenting.  Whatever it is, it's good.  However, we know all too well now that things can change suddenly, and we don't take the good for granted, not for a second.

The other is that while I had my dark night last night, what kept the memories from overwhelming me was remembering the support I got from friends at that horrible time---friends in person and friends from around the world I know from this blog.  You all were incredible.  Your love and support and generosity---I cannot possibly say how much they meant to me.

Here's a picture of my big girl, wearing a jacket I bought for her brother that he didn't like but she loves for some reason.  My love for this amazing girl keeps me going---with a little help from my friends.

Monday, November 9, 2015

In an alternative timeline

I read a lot of books about time travel and alternative timelines and parallel universes and the like.  I don't really believe in any of them, but thinking about them fascinates me and often makes for some very good reading.  Usually, though, I don't put such thoughts to use on my own life, or Janey's life.  This weekend, I did.

I saw several pictures on Facebook on Saturday morning of kids preparing to take the Boston exam school test.  They were kids that started kindergarten with Janey, and it hit me that if Janey had stayed in their grade, if Janey had developed typically, she would have been taking the test on Saturday.  The test determines if you get into one of Boston's exam schools.  Janey's brother Freddy went to Boston Latin School, as did my husband Tony (William also got in, but chose not to go).  Freddy and Tony had a great experience with the school.  It's a special place---the oldest school in America (founded in 1635!)  And it's so far removed from any educational route Janey is taking that it might as well be on the moon.

I let myself spend a few minutes, after seeing those pictures (which were great to see, and I am truly happy and excited to think of kids I know Janey's age going to Latin), what it would be like if Janey were "normal".  More specifically, what would this past weekend have looked like?  Well, we would be nervous about the test.  We'd have taken her there early, to stand in line.  She would have had to go in herself, as the boys did, and we would have gone home and thought about her.  After the test, we would have talked about it, and maybe gone out to lunch.  Then, we would have done what we did in the regular timeline---picked up both Freddy and William at the train station, both of them visiting from college for a bit.  She would have listened to their college stories, and told them her own exam stories.

As I write this, I am crying.  Usually, I don't mourn the Janey that could have been.  It's a useless thing to do.  That Janey doesn't exist.  I love the Janey I do have.  But somehow, I got a vision of that Janey, what she would look like, talk like, be like.  And it made me heartbroken, for a few minutes, thinking about all she is missing.  She is missing so much of life.  She won't just not go to Latin.  She won't go to college.  She won't get married.  She won't have children.  Her life is not going to have the milestones, the joys, that so many people can take for granted.  And I usually would pipe in here, reminding myself and others that she also won't have some of the heartbreaks life brings, but I don't feel like it, right now.  Those heartbreaks are worth it, for the great joys that the things she will miss can bring.

And why?  That's another thing I don't usually dwell on.  But why is Janey autistic, and severely developmentally delayed?  What happened?  I have no shortage of possible reasons, but that doesn't really help.  Why doesn't she progress in the way that most kids with autism seem to progress?  Why, even in her autism program, does she seem so far behind?  What have I done wrong?  I know the answer is that it's not me, but of course, I ask that anyway, in private.  And I guess here, in public.

Most of the time, I can rejoice in the Janey I do have.  But sometimes, I feel life has been very unfair to her.  Not to me.  To her.  I wish I could say "But she doesn't know any differently!  She's happy as she is!"  But she isn't happy, much of the time.  She's not happy at all so often.  She suffers, emotionally and sometimes physically.  She might not know specifically what she is missing out on, but I think she does see that life is more frustrating to her than it is for many others.

And now I will bury these thoughts again for a while.  There are some things you can't think about very often.

Tuesday, November 3, 2015

The New Pediatrician...Autism at the Doctor's Office

A few months ago, I made the tough decision to switch Janey to a new pediatrician.  Our old pediatrician had been with us since the day my oldest William was born.  He helped us with William as a little preemie, he guided us through both boys' asthma, and he was at the end of a number of desperate phone calls at various times in my years of raising the kids.  I liked him a lot.  But for a number of reasons, he wasn't the right doctor for Janey.

The most important one was just in terms of ease of transportation.  He was at a clinic in the city, one I couldn't drive to.  It was very easy to get to by public transportation, but with Janey, that's not always practical.  I needed a doctor I could drive Janey to easily, so Tony wouldn't have to miss work.

The other reason, though, is that I never quite felt he felt comfortable with Janey.  I am not faulting him for that, at all.  Janey is tough.  He was professional with her, but I don't feel like he truly got her.  And that's okay.  Not everyone is able to deal well with a child like Janey.  I have realized that over the years.  Some friends fall away when faced with the reality of her.  Others step up to the plate.  To be brutally honest with myself, if I had not been thrust into the world of parenting a child like Janey, I might be one of those who didn't deal well with it.  And so I try to understand that not everyone can.  But after Janey's appendix rupture, I realized it was vitally important for me to have a pediatrician who felt comfortable with her.  Her old doctor had nothing to do with diagnosing (or not) her burst appendix--that was all done at the hospital--but I realized I needed a doctor who felt comfortable enough with Janey to tend very closely to her physical health.

So how did I pick this new doctor?  I'd like to say I did all kinds of research, and interviewed doctors, and all that.  No, instead I picked the clinic I'd like to drive to, looked at the pictures of the pediatricians with openings and chose the one I liked the looks of.  That's how I roll.

We took Janey after school last night for her physical with the new doctor.  Things in the waiting room did not go well, to say the least.  Janey thought she was going for a ride, a nice long ride with lots of music, although we of course told her she was going to the doctor.  But when the reality of that hit, she screamed.  She screamed for the whole half hour it took us to be put in a room.  Then she screamed in the room.  She stopped a little while they took her height and weight and blood pressure---she likes that.  But she resumed screaming after that.  This wasn't the fault of the office.  Monday night is a busy time in a doctor's office.  I hadn't realized that.  And they were very sweet to Janey as we waited for the doctor, but Janey was not happy to be there.  We kept reassuring her this was NOT the hospital, she WASN'T going to stay overnight---but I am sure there was some flashbacks for her that weren't pleasant.

And then the doctor came in, and I somehow knew immediately we'd gotten lucky.  I liked her right away.  I loved how she addressed Janey directly, asked what she liked to be called, said she was sorry sincerely for the wait, noticed within a minute the main thing I'd been worried about (that Janey's spine seems curved), examined Janey quickly but thoroughly, was there for any questions, and emphasized over and over that we could call her about anything, any time.  She was warm and caring and just exactly what I had been looking for.

Janey calmed down while she was there and took to her right away, which is not the case with everyone, that's for sure.  Everything went well, until of course shot time.  Somehow Janey had gotten a little behind on shots, and in fact had never somehow had the 2nd chicken pox vaccine she was supposed to get a while ago, so she needed 3 shots.  Two nurses came in to give them to her.  We held her down, probably more so than at first the nurses thought we needed to, but the minute she got sight of the needles, she screamed and tried to bolt, with amazing force and suddenness.  They were startled!  We managed to get her held again, and she didn't seem to mind the actual shots at all.  We left feeling good about the appointment, although drained.

So now, we have to get an xray to see if Janey has scoliosis.  I hope she doesn't, of course.  We also discussed various options for dealing with PMS, if that becomes a problem---we've just started down that whole road.

I'm glad we made the doctor change.  It's hard sometimes, not just with doctors but with people in general, to accept that not everyone is going to embrace Janey, but it's a fact of life, and I understand it.  It's up to us to keep working to have as many people in her life as we can that do embrace her.

Saturday, October 31, 2015

Janey's Halloween

Growing up, I'd say Halloween was my favorite holiday.  I vividly remember counting the days until it arrived each year, as most people count down to Christmas or their birthday.  I loved it for the candy, of course, but also because it felt like a day that usual life took a turn.  You could go to people's houses, knock on their doors, and they would give you candy.  Since we lived in the country, my father drove us around town, and our haul was limited a bit by that, so I used to daydream about when I would have kids, and we'd live in an area with LOTS of houses, and they could trick-or-treat the night away and come home with HUGE bags of candy.  That did happen, for a few years with the boys.  But kids grow up and either don't go out any more, or go with friends instead of parents.

Janey never really warmed up to Halloween in past years.  She didn't much like dressing up, and she wasn't terribly motivated by candy.  I didn't push it.  I wished she would be interested, but she wasn't.  Last year, Halloween came right before the very worst time ever, when she was really breaking down.  We went to one house only, our next door neighbors, and she was done.  A few others years, we didn't even try trick-or-treating.

This year, I signed Janey up for a Halloween party put on the autism support organization for our area, for the 30th.  We went last weekend to get a costume.  I let Janey pick what she wanted, and she pointed to a shimmery long cape, overpriced, but I got it anyway.  I didn't get any hats or masks or other accessories, because a cape is about all I figured she'd tolerate wearing.

We went to the party last night.  It was not a hit, but not a disaster, either.  We stayed about 10 minutes.  The room was hopping with kids and adults.  We got there about half an hour after it started, which I thought would be good, as I knew Janey wouldn't want to stay the whole time (2 hours) but that might have been a mistake, as things were so crowded once we got there.  It was set up to have volunteers take the kids while the parents sat at the edges of the room.  I liked that idea, but I knew in practice it might not work with Janey, and it didn't.  The room was set up in activity stations, with the idea that each child would do an activity and then get candy at each one.  The first activity was decorating a treat bag, with coloring and writing a name and stickers.  Janey can write her name, sort of, under ideal circumstances, but not with a stranger in a noisy crowded room, and she doesn't color.  So they lost her quickly, and she ran over to us and said "want to go for a car ride?"  We tried to get her to stay a little longer, but it was obvious she was done.  In keeping with our new philosophies, we left, although I have to admit I was disappointed.  It is hard when she doesn't tolerate things that are specifically for kids with autism, and I'm always surprised how many kids with autism seem to be having a great time at them.  I love it that parties like this one are available, and I'm glad we went even for a little while, but's hard sometimes when even in the world of autism, Janey stands out.

After the party, I wasn't hopeful for trick-or-treating, but I really wanted to give it a try.  First, I took Janey to our next door neighbor's house, the one house we did visit last year.  Janey has had the urge to trick-or-treat there almost every day since, and it's hard to convince her that it's a once a year thing!  So she was very happy to go back there!  They are so sweet and kind to Janey.  We are lucky with our neighbors on both sides.  Then, we went over to my friend Maryellen's house a few miles away.  I figured at least Janey would be able to trick or treat there.  Once we were there, I decided to try taking her to a few houses around their neighborhood.

And that was...wonderful!  I am still almost in tears over how well it went.  Janey was excited!  She marched eagerly along, going from house to house, taking a piece of candy, sometimes saying "trick or treat" and sometimes saying "thank you!" but always smiling and flapping with excitement and singing to herself.  Everyone noticed how happy she was, and we got absolutely nothing but positive looks and comments.  It was like a dream.  These weren't people I knew---they were Maryellen's neighbors, not mine, and they hadn't met Janey before, but they were to a person kind and sweet to her.  We went around for about 20 minutes, picking up lots of candy, and stopped while Janey was still very happy.

I think as Janey gets older, in some ways, people accept her more.  I didn't say to anyone that Janey was autistic, but I think everyone knew.  She is almost as tall as I am, she looks older than her actual age, but I held her hand all the time, and spoke for her when she didn't speak.  And when Janey is happy, there is something about her that draws people to her.  I might just be saying that because she is my daughter, but others have told me the same thing.  She is so blissfully happy, so purely happy, that others are happy being around her.

This has turned into one of my longer blog entries in a while!  I'll stop for now, and just say Happy Halloween to everyone.  And say---keep holding out hope.  When I look at how Janey did tonight, I am amazed.  It might never go this well again on Halloween, but I have tonight to remember.

Wednesday, October 28, 2015

Speaking for Janey

There's a lot of buzz lately about Sesame Street and their introduction of a muppet with autism, Julia.  I haven't spent a lot of time looking at their resources, although I read the on-line book they have about Julia and liked it a lot, probably because Julia sounds a lot like Janey.  But in keeping with a habit I have too often, I've read more about reactions to the whole Sesame Street autism program than I have their actual material.  Much of the reaction is positive, but some of it was critical, not so much of the material for children, but the videos for adults, and a lot of the criticism was that the autistic kids were not allowed or shown to speak for themselves---their parents were speaking for them.

I very much feel that whenever possible, it's important to listen to people with autism.  I have gotten many of the very best ideas for helping Janey from people with autism, especially one wonderful friend who is active on Facebook.  Thank you, Sophie!  However, I kept feeling when reading the criticisms---what about Janey?  What about kids like Janey, who cannot speak for themselves?

Of course, in some ways, Janey can speak for herself.  She can tell me her basic wants, if they are in words she says---"Snuggle on the bed!  Want cheese!  Want Chinese food!  Do you want to take a car ride?"  That's the kind of speaking that others can understand, but I think Janey has a lot more to say, and she literally can't say it.  She doesn't use any communication apps or tools, she has a very limited ability to communicate verbally---if you were looking to learn about Janey's world by listening to her, by her speaking for herself without any help, you wouldn't learn much.  Or maybe you could, if you spent a day with her, but in terms of the bigger world understanding Janey, that is not practical.

And that is where I come in, and my husband Tony, and my sons.  We speak for Janey.  We might not always get it right, but we try.  We want people to know Janey, and in a larger sense, to know all the Janeys of the world, the people that are not able to communicate in a way that is understood by most.

Tony wrote about life with Janey as a guest post here, and I loved it.  William and Freddy, my sons, have written guest posts too.  When reading about how people were upset that kids with autism were not being allowed to speak for themselves on the Sesame Street autism page, I thought "everyone in the family has done a guest post except Janey, and she's the focus of the blog"  And of course, she can't.  Or can she?  I hope, I very very very much hope, that I have spoken accurately for Janey with my own writing.  I'm sure I haven't been perfect.  I'm sure there are things Janey would have wanted everyone to know that I haven't written.  But I've done the best I can.

If we insist the only valid information about autism is by those who can speak for themselves, we leave out a lot of people.  Should I never speak for Janey?  Should I wait until the day that might never come, when she can speak for herself?  I don't think so.  I don't like to be controversial, but in this case, I will say quite strongly---I will keep speaking for Janey.  She deserves that.  When and if she is able to speak for herself, I will move heaven and earth to give her a forum for doing so, but for now, I will do my level best to speak for her, to give her and people like her a voice.  She deserves that.

Saturday, October 24, 2015

In The Driver's Seat (Guest post by Janey's daddy!)

For the first time ever, my husband Tony wrote a guest post!  It's written as a letter to Janey, to show appreciation of the changes that have allowed us to travel a bit more lately.

Thank you, Janey!

For the past four months, Janey, you have allowed me to be in the driver's seat of Daddy's car. Almost every day, I take you on at least one car ride, because you want me to play music for you in my car's disc player. This is something you have wanted me to do since you came home from the hospital, after you were very, very sick from your appendix bursting.

You like these car rides with our music that I play for you so much that you seem to also enjoy your bus rides to school in the morning and the afternoon bus rides when you come home from school.  A lot of times you run happily onto the bus in the morning, and Mama tells me that you run off the bus all happy in the afternoon and bolt right into the house.

Daddy's car rides with our music seem to make you so happy, even after you have been very angry or sad, that your brother William said to me, after he came along with us once, "wow, it's like giving Janey medicine." 

Most times our drives together are about an hour long, but sometimes, you and Daddy like the music so much that we drive for two or three or more hours. You hear some songs, like Santana's "Soul Sacrifice" from Woodstock in 1969, or The Ventures' "Wipe Out" from Tokyo in 1966, and you soon look like a humming bird as you drum your arms so fast out of happiness that they become a blur!  Sometimes Daddy and Mama think that our old car is breaking but it's really just you dancing and rocking so fast in the back seat!

And when we drove far away to take Freddy to his new school in New York, and to Maine to see Nana, Grandpa, and Aunt Sarah, you were so nice and happy in the car with our music playing, even when we were stuck for a long time in silly Massachusetts' traffic! And you were so good and happy in the hotel houses we stayed in.

And Janey, you put a big smile on Daddy's face whenever you come up to me now and say the first words of a song you want to hear on the next car ride, like, "You want to hear "generals gathered in their masses"?" That song is called "War Pigs" by Black Sabbath, which you like because your brother William has played it on his guitar and sang for many years in his room.

Mama has made you many music discs and put songs on your iPod since you were a little girl that we now play in the car, like "Angels We Have Heard on High" and Johnny Cash's funny song "In the Jailhouse now." And Janey, when you want to hear "Folsom Prison Blues" and you make your voice sound lower and say "hi, I'm Johnny Cash," you do that so well! We play songs "Beat It" and "Bad" from the disc Freddy gave to you for Christmas.  And you laugh a lot when daddy plays Weird Al's "Eat It" and "Fat." Daddy laughed so loudly when you said to me "you ain't fat, you ain't nothing!"

Janey, I hope we don't get too much snow this winter, because I still like to drive you around!

Again, thank you, Janey!

Sunday, October 18, 2015

Little getaways, now surprisingly possible

This past weekend, we took a little trip to Maine. We stayed a couple nights at a hotel, and got to see my dear Aunt Sarah, my mother's younger sister.  I haven't seen her in eight years, and she hasn't seen Janey since then, so it was wonderful to see her.  What was also wonderful is that the trip was even possible.

A year ago, or pretty much any time in the past eight years, we could not have pictured a weekend trip working at all with Janey.  We basically took no trips during that time, at least the kind that involved a good deal of driving and time in a hotel.  Janey would never have tolerated the drive, and a hotel would have been a nightmare, as she would have been almost certain to scream so much that we would have been kicked out.

The inability to travel with Janey was hard.  Tony and I love travel---not big time exciting vacations, but weekend or a little longer trips, the kind where the biggest entertainment is seeing new places from the car window, where we get fast food to bring back to the hotel, where we see family or friends for a bit and just relax for a while.  We did that kind of thing a lot with the boys when they were younger.  We saw a lot of the Northeast during that time, and had a lot of fun swimming in hotel pools and eating at rest stops.  We wouldn't even have wanted to take Janey to Europe or Disney World or on a plane, but we did long to just be more able to go to see my parents in Maine for the weekend, or something like that.

Tony and Janey on a little stretching legs stop at China Lake, Maine.
Something happened this summer.  Like we often date Janey's autism to the only very big family trip we ever took, a cross-country drive when she was three, we are dating this change back to Janey's long hospital stay from a burst appendix.  Janey seems changed.  There are still tough days, lots of screaming times---we aren't under any illusion that life will be easy-breezy from now on---but somehow, it has become possible to travel a little with Janey.  A big part of it is she now loves car rides, just like Tony and I do.  She's happy in the car for almost unlimited amounts of time, as long as music is playing and we keep moving.  She also, based on this trip and our last trip to take Freddy to college, likes hotels.  When we got to our hotel in Maine on Friday night, we worried about the noise for a very different reason than we would in the past.  We worried her yelps of joy would bother people.  She was overwhelmed with happiness to be in the hotel room.

Thinking about it, it's partly that Janey has changed, but it's also partly that we have changed.  It's sort of like a compromise.  We do what Janey likes, more and more.  For example, the music in the car is all for Janey.  Luckily, she likes a wide variety of good music, but if she doesn't like a song, we don't listen to that song.  We plan our days so that she will be content.  Yesterday, Tony stayed at the hotel much of the day with Janey, doing little drives to get food and letting her dictate the day's pace, while I spent time with my parents and aunt.  We didn't try to do everything with Janey in tow.  Later, we went to my parents' house, but as soon as it was apparent Janey was tired and ready to go, we left.  We all got to do some of what we liked, by making sure Janey was able to feel comfortable and happy.

It feels like a bargain, a trade.  We are getting what we want---the ability to do more of what we enjoy, and Janey is getting what she wants---her needs put first.  It's a win/win---a nice example of a rare win/win in life.  It's making us able to look at the future with a little more hope than we have had in a while, thinking of seeing the country a little at a time, in our own way.  It wouldn't be the two of us, as we daydreamed about years ago---it will be the three of us, and I think we can make that work.

Tuesday, October 13, 2015

800th Post!

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

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

Post 100---"Crying Day"

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

Post 200---"Toys"

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

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

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

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

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

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

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

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

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

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

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

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