First day on the road

I'm going to try to write a little every day about our week long trip with Janey, to remember it and to share how it goes and anything I might discover about traveling with autism along for the ride!

This is the first trip we've attempted with Janey since she was 3, when she was diagnosed with autism.  Her diagnosis actually came soon after our last long trip, a 3 week cross-country one.  In some part of my mind, the part that likes to blame myself for things, I wonder if the trip had some part in her rapid decline at that point.  I don't think so, but for that reason and much more just because even short trips with Janey were tough for years, we haven't travelled more than a night or two since, and not much of even that.

For this trip, we will be gone 7 nights, in 5 different hotels.  There will be quite a lot of driving, as we go from Boston to the Toledo, OH area. 

We got on the road today about 9, and arrived here in Scranton, PA about 5.  What would be normally a bit over a 4 hour drive took us 8, but that was okay, as it was necessary to keep Janey happy, which, for the most part, she was.  Most of our stops were to deal with something that was upsetting her that swe couldn't do while driving.  She has her special pillow with her, and sometimes, it had to be next to her, while other times, it had to be out of sight in the luggage area.  I don't know why, I think only Janey's OCD knows why, but we stopped to fix that a couple times, as well as put in and take out her ponytail.  A few times, she screamed "WANT THAT SONG!" but wasn't able to say what song it was.  Luckily, I suggested a few songs and either got it right or made her think of another one that would work.

The most upset she got was in the hotel room, with her iPad.  She wanted to watch YouTube Kids, but I hadn't set the wi-fi yet.  She came close to biting me, but I evaded it and got the iPad going.  I think by that point she was just burnt out, and wanted to do something that felt like home, and once she did, she was calm.

We promised her swimming at the hotel, but she has fallen asleep before we could go, so we'll do that in the morning.  I hope she sleeps well.

Tony and I have talked about how this trip goes will be something we are paying close attention to, as what we hope to do when he retires is a lot more trips like this, to see the country.  We are low-key travellers, often happy with looking at car scenery, eating fast food and swimming in hotel pools, and if we can do that more in 5 years or so, we'll be happy.  If not, we'll make another plan, as Janey's happiness is a necessary part of our happiness.  We are encouraged by the many big smiles we saw today, on what was mostly a good start to the week.  Tune in tomorrow!

Summer memories

Today was the day I think of as the first day of summer---the first day of the first full week without school.  I will be totally honest and say it's a day I dread.  I've never, ever liked summer much.  I don't like the heat or the lack of routine.  With Janey, a summer day can feel endless.  I am very grateful for summer school, which starts in two weeks.  But today---it was a long day.  Janey screamed a lot, cried a lot, just was very out of sorts.  I felt out of ideas for the whole summer by nine in the morning.

Tonight, looking back on today, I realized something interesting.  Janey knew what the day was.  She knew it was the start of summer.  I realized that because of what she asked for.  First thing in the morning, she wanted to walk to the "ice cream store".  That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat.  We did that.  A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?"  She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine.  Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?"  Again, something we did very often last summer---walked to the train station to meet Tony as he came home.  We haven't done it since last summer.  Lastly, she then asked "Get Chinese rice?'  Yet another thing from last summer---having Tony bring home Chinese food often.

I don't know how it made me feel that Janey remembered all that.  It made me feel sort of guilty, that her summer memories are of such mundane things.  It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken.  It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.

I wish I could do more with Janey in the summer.  But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger.  There are splash parks around, but they are filled with toddlers and preschoolers.  Janey is the size of an adult, and unpredictable around younger kids.  There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school.  Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't.  The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly.  So, much of the time, we stay home.

With that being said, I am hugely looking forward to later this week.  We are taking a trip!  Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on)  I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools.  We are going to keep everything as low key as possible.  I still am not sure how it will go with Janey, but I hope well.  She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!)  So wish us luck in making some new summer memories for Janey.  I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!

The Happiest Day

This past Saturday, we went to a little amusement park called Thomas Land.  It's an offshoot of a long beloved Massachusetts attraction, Edaville Railroad.  It's aimed probably at the 3-6 year old demographic, an age we don't have a representative of, but William when he was that age was one of the world's biggest Thomas the Tank Engine and Friends fan, so even now that he is 21, he had an urge to take in the park.  We took Janey along not at all sure how she'd feel about it, but wanting to give it a try.

Well, I would have to say it was Janey's happiest day ever, as the video above of her extremely happy flapping shows.  It was amazing, astonishing, purely wonderful.  She was happy, and often overjoyed, the entire time we were there.  She and Tony rode almost every ride, she danced to the music playing in the park, she rode the Thomas train twice, and even when we were just sitting to rest, she beamed at William like we've never seen before.

Janey looking at her brother William with a hero worship look!

I have to admit I'm not really an amusement park person.  I don't like rides, especially anything that goes around in circles, and I don't like the high prices of the food and souvenirs and park entry.  I almost sort of prided myself on thinking my kids would feel as I did..."Janey has some pretty sophisticated tastes.  She's not into things like amusement parks".  I was wrong.  And I'm very glad I was.

Janey's unprompted wave from the elephant ride

My friend Rebecca sent me a link to this blog post, written by a woman with autism about how strongly she feels joy in the things she loves, what she calls the "obsessive joy" of autism.  It make me think a lot.  I don't think I've ever, ever been as happy as Janey was at the park for as long as she was.  With me, there would always be something holding back the joy a little, even when I was 11 as she is.  I'd worry socially---were the people with me happy?  I'd worry about safety---was the ride going to fall over?  I'd worry about how long
we'd stay---was someone going to make me leave before I wanted to?  I'd worry about food---when were we going to eat?  What would I get to have?  I'd worry about the ride home, about the weather, about anything and everything.  Admittedly, I'm a worrier (less now than at that age, but still...) but I think it's a common thing to have our joy measured with worry or care.  I know Janey has worries and cares, but I think she's able to focus on happiness when happiness is what she is feeling.

Thomas in all his glory!

The world is a scary place lately.  I've read a lot about what people are doing to explain the events in Orlando to their kids.  Sometimes, I am glad I don't have to do that with Janey.  She is unaware of world events.  I'm glad of littler things.  She will be going to a new school for summer school (back to her old school in the fall, but summer school works differently) and I am nervous about that.  Janey isn't.  I don't know if she understood me when I told her about the change, but either way, I am pretty sure she doesn't worry much about the future.  She is very sad in the moment when she is sad, but she is also very happy in the moment that she is happy.  I'm not saying it's a better way to be, or a "gift" of autism, but it simply is what it is, and I am happy she can be that happy.

We might get a season pass next year to Thomas Land.  I don't know if any day will be as special as this past one, but I am pretty sure we'll be visiting Thomas, Percy, James, Toby and all the crew for years to come.

The tension of a guard never fully let down

The last few weeks, I've been very tense.  It's strange, because, as I've written recently, Janey has overall been fairly calm.  She's had an increase in crying the last few days (jinxes are real, as all Red Sox fans know!), but my tension predated that behavior spike.  As I lie awake at night lately, I think "Why in the world are you so tense?  Why can't you relax?"  Last night, I answered myself.  I said "Think about the last eight years of your life"

In the last eight years---well.  Janey had her horrible regression and was diagnosed with autism.  We had countless days of all-day crying and screaming, many nights with no sleep at all.  The school our children had been attending for many years and the school I thought Janey would go to until age 22 decided they could no longer handle her level of disability.  After about six months at her new school, she went into a crisis and wound up first boarding at Children's Hospital for six unbearable days and then spending three weeks in a psychiatric hospital.  Then, the next year, after three days of increasingly severe symptoms, she was diagnosed with a burst appendix, had emergency surgery and then weeks and weeks in the hospital with complications.  Last January, a bad flu and pneumonia landed her back in the hospital for a few days.  Top that all with life's regular stresses---two sons in college, financial challenges, the everyday this and that and the other thing....well, let's say that if I wasn't tense and stressed, it would probably mean I hadn't been paying attention.

But why can't I relax on days when everything seems fine?  It's because my guard is never, ever fully down.  A day that seems just fine can turn on a dime.  I can get a call from school that Janey is sick, or having a behavioral crisis.  Janey can come home screaming and biting.  We can have one of our occasional sleepless nights.  Janey can get a fever, not be able to tell us why and end up suddenly critically ill.  We can have a day where she is as sunny as she can be suddenly turn, for reasons we don't understand, and just like that we are dealing with a level of chaos some people might not see in a lifetime.

Stress in parents like ourselves is something that is very hard to understand unless you've lived it.  It's the reason sometimes it might seem like we overact to small things.  It's the reason we are not always quick to be excited about what seems like good news.  It's the reason we are often not ready to try new things, go new places, take any risks.  It's the reason some days I have the near overwhelming urge to get into the car and drive---drive far away, away from my life.  I can't and won't ever do that, but if I did, the thing of it is that I am sure the stress would follow me.  If Janey someday lives away from home, I know from hearing about others with autistic kids living away from home that you still can't ever relax.  Things can fall apart fast, wherever your child is.

And so---what can we do?  We can be easy on ourselves.  We can accept that stress, tension, worry, all those, are always going to be part of our lives.  We can treat ourselves when we can to life's little pleasures, without an ounce of guilt.  We can drink our coffee, play our games of Scrabble, watch our mindless TV, read our escapist books.  We can call friends and laugh like crazy over the phone.  We can let sleeping dogs lie, let our child watch that video for the 100th time while we sit and do nothing.  We can stop thinking, pretending and having to present an image that our lives are more in control than they are.  We can accept that we have in some ways been dealt a challenging card, and admitting that doesn't mean we don't love our kids, that we aren't good parents.  We can support each other.  And we can keep on going.  That last one isn't a choice, but some days, it's all we can really do.

The Janey of today

On my Facebook feed today, a picture from three years ago came up, which I re-shared, a picture of Janey looking at herself in the reflection of the John Hancock building.  I love that picture.  I think it's my favorite of all the pictures I've taken of Janey.  It struck me a lot today, looking at it, how much Janey has changed in the time since it was taken.

The Janey of today is a very different girl than the Janey of three years ago.  She even looks a lot different.  When she was in the hospital a year ago, her hair got so hopelessly tangled we ended up cutting it short.  When it grew back, it came in very curly, like her brothers' hair, although up until that point it had been pretty straight.  It also was darker in color, more of a light brown than blonde.  She is also a lot taller and a lot more mature looking.  She looks much older than her 11 years, not younger than her years as she did as a little girl.

It goes a lot further than looks, though.  Especially over the last year, Janey is far calmer than she used to be.  Her outbursts and screaming spells still happen, but less than before, by far.  She hasn't had a day in a while, knock on wood, where she cried all day.  Those days used to be fairly common.

However, there are parts of the differences in Janey that are less positive.  A big one is speech.  She talks less than I think she ever has, except for when she was two, before her regression.  It's extremely rare to hear a complete sentence from her any more.  Most of her speech is single words now and then, or short well-used phrases "Cuddle on Mama's bed! Want cheese!  Socks on! Want shower!"  I read old blog posts and sometimes it's very hard reading what she used to say.  Her talking has always ebbed and flowed, but this low ebb has lasted a while.

In general, Janey is more introverted than she used to be.  The other day, I realized she had barely interacted with us all day.  She watched YouTube on her iPad, or videos on TV.  She takes car rides with us, and listens to music and looks out the window.  Hours can go by when she doesn't ask for anything or need anything.  At first, this was a bit of a break.  At times, it still is.  But something feels lost.  I feel sometimes like her personality is slipping away a bit.

Who is Janey today?  She's a beauty, if I might say so myself.  She's a lover of music, as much as ever.  Out of the blue she'll ask for a song she hasn't heard in ages, or will start singing it.  She's a great user of computers, at least in terms of opening YouTube, picking videos, switching between them and knowing which ones to put on to make the other she wants show up in the suggested list.  She's a great eater of good food, much more than I am.  She asks for "soup", which is kale with olive oil and hot sauce, all the time.  She's, most of the time, a pretty good sleeper.  She loves a good ride to anywhere or no-where.

Janey is also, though, a person with very, very little speech.  She is someone who has almost no traditional academic skills.  She can't read, write, do math, name her shapes or colors---although I know she knows much more than she can show, what she can show is very little.  She's someone who is unable to tell us things we need to know for her basic safety---if she hurts, if something upsets her when she isn't with us (or often even when she IS with us).  She will not be capable of living on her own, ever, unless a miracle happens.  She will not hold a job.  No matter how you look at it, no matter how much we accept her as she is, and we do, no matter how much we love her, and we love her beyond all words, she is extremely disabled.

What are my hopes for the Janey of today, and of tomorrow?  I hope we are able to care for her at home for a very long time.  I hope she is always treated with dignity and kindness.  I hope she is able to enjoy life, to do the things that bring her pleasure.  I hope when we are gone, the world is ready for her.  I hope by that time, there is a place for her, a place she can live her life to its fullest.  I hope she is always as happy as she was that day she saw herself reflected, a beautiful person inside and out.

Autism and OCD?

Janey comes to me with the remote, wanting me to put on a Netflix show.  I do, and she takes the remote back.  It gets placed on a closed laptop, precisely in the middle.  She watched a few minutes of the show, and then goes over to the remote to adjust it, to make sure it's in exactly the right place.  A few more minutes of watching, and she goes to where her shoes are.  She's previously arranged them as they always must be, left on the left and right on the right, lined up exactly next to each other.  She looks at them and does a little adjusting.  Then she touches the corner of the coffee table, then the wall in a certain place.  She looks at me.  I've broken a rule.  My legs are crossed.  She patiently takes my feet and moves my legs to the right, non-crossed position.  Then she watches a bit of her show, and then it all starts again.

Janey has never been formally diagnosed with OCD, Obsessive Compulsive Disorder, but I am quite sure she has it.  I have more than a passing knowledge of the signs.  

I've had OCD as long as my mind goes back.  It's been well under control for many years now.  It never goes away, but it affects my life very, very little.  Still, I well remember what it was like.  There are several types of OCD.  Mine was a checking one.  I needed to check that things were where they should be---my keys in my pocketbook, my pocketbook hung up.  When I was little, it was bookbags, or stuffed animals, or even little rocks I'd collected.  Checking once was no assurance.  I'd have to check over and over and over---sometimes hundreds of times.  

Janey's OCD seems to fall into the arranging/symmetry category.  She needs things to be in the right place.  Not all things---she's as much of a slob as the rest of us with most things---but certain things, like her shoes, must be just right.

If you are even interested in learning more about OCD, I recently read a fantastic book about it---The Man Who Couldn't Stop, by David Adam.  It's a personal account combined with the science and psychology of the disorder, and it was one of those books which gave me about 20 "That's exactly how it is!  Now I get it!" moments.  It was terrific.

Thinking about Janey, I am quite sure I first saw the signs of OCD in her long before the autism.  As soon as she could use her hands, maybe at 7 months or so, she would move my hands to the place she wanted them to be, to hold things symmetrically.  Even that young, crossed arms or legs bothered her.

OCD is strange in that it ebbs and flows.  Years can go by with it barely showing its face, and then it pops back up badly.  Lately, it seems to be at a high level with Janey.  It's interesting---it doesn't seem to distress her a lot.  When she does the arranging, it's with a huge amount of patience.  It's like a job that must be done, hundreds of times if necessary, but with good will.  Much of what is usually distressing about OCD is that you understand what you are doing would be considered crazy by most.  When I was checking something for the 100th time, I was telling myself "STOP IT!  You KNOW it's there!  What is wrong with you?"  Maybe Janey doesn't have that inner voice telling her anything like that.  Sometimes, the OCD rituals seem to calm her.

There are times, though, that it must be awful to need something done a certain way and not be able to communicate that.  Lately, after a shower, I am not drying Janey's hair the way she feels it should be dried.  From what I could figure, I used to dry her hair some specific way, while saying "Let's dry-za-la-high-za!"  I say a lot of little things like that, as I think most people do when talking to someoen who doesn't often talk back.  We tend to want to fill the silence.  But lately, I'm somehow not saying it right or drying in the right sequence.  Janey gets very upset.  She grabs my hands and pulls then with the towel onto her head, and screams "DRY-ZA-LA-HIGH-ZA!" over and over.  

The other night, after a long round with the towel, I told Janey about OCD.  Like with so many things, I have no idea how much she understood, but I told her that I know how it feels, that I've felt the same thing.  I talked to her about the shoe arranging, the remotes, the crossed legs, the drying.  I said her mind might tell her that bad things will happen if she doesn't make sure everything is in the right place, but that's her mind playing tricks on her, silly mean tricks.  I told her I understood.  She looked at me for a long time, one of those uncommon looks of connection.  I don't know what she took in, but I hope it helped, a little.

It doesn't seem fair.  If Janey does have OCD, why must she deal with that in addition to everything else?  But of course, as the classic saying goes, life isn't fair.  And in a small, strange way, it's a connection with Janey, a part of her I share, sometimes I can maybe help her with.  I'll keep trying.