Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

October is the cruelest month

A few years ago, when Janey wound up at in a psychiatric hospital, quite a few people told us that October is the month many crises such as the one she was in then start.  They think it's a combination of things---the newness of the school year wearing off and reality hitting, the lessening light, the change in the weather, the lack of big holidays---but whatever it is, a month you would not expect is the month that's hardest for kids prone to being upset.

This October has been tough so far here.  This weekend and the past weekend have been pretty rough for Janey.  She isn't happy.  It's remarkable how long it's been since she's been unhappy like this.  We had a good long run of happy times---of course interrupted now and then by sad days, but it's been a long time since we had a weekend like this and last one.

This weekend, Janey has been screaming a great deal.  We can control the screaming a bit with the old reliable things---a car ride or food---but the car rides get cut short with more screaming and the food would have to be more constant than is healthy or possible to keep back the sadness and anger she seems to feel.

The most frustrating part, for us and I am very sure for her, is how hard it is for her to communicate just what is upsetting her.  Is it physical pain?  Did something upset her when she wasn't with us?  Is she worried about something?  Is she bored?  Is she annoyed with us?  Does she miss her brothers?

We are left, so often, playing a guessing game with her as to what is wrong.  When she is screaming or crying, her already very limited speech becomes even more so.  When we try to guess, often she falls back on her default response---"YES!"  So we say "Do you want a different TV show?" and she screams "YES" when that isn't what she means at all, and we change the show, and she gets even more upset.  I feel awful for her when this happens.  I'm sure it feels like a nightmare for her, being so upset and so unable to explain why she's so upset.

We planned a trip to Maine to see my parents this weekend, especially to see my father, who is home after his awful fall and hospital and rehab stay.  But it's not possible to drive when Janey is screaming.  It's not safe, for her or for us.  And she just cannot be cared for by one person alone when she is in screaming crisis mode.  We tag team.  She's been up now for a long time, and Tony is getting a little hugely deserved sleep while I write this at five in the morning, stopping often to try to calm Janey's outbursts.  I feel, quite honestly, trapped and overwhelmed.

I do believe this will pass.  We've seen times like this before, and they don't last forever.  But while they do last, I want more than anything to find a way to help Janey explain what is wrong.  She is thirteen.  I am sure sometimes what is wrong is that she's bored of us, she's feeling a teenager's angst and annoyance at the world, she is frustrated with her life.  But how do you deal with that kind of feeling when communication is tough?  And I don't want to assume, to say to myself "Oh, she's a teenager" if there is something else wrong.  How do I know?

When the general public thinks of autism, I don't think they think of this.  This isn't the quirky savant, or the toddler full of unlockable, fascinating potential.  This is an amazing, beautiful, complex teenager who is not able to communicate, a person who is not a statistic, or a symbol, or a problem, or a project.  This is my Janey, and I wish so much I could help her be happier.

Thinking about guilt

A few weeks ago, a tough day hit my family.  I thought the toughest part was going to be going to the dentist.  I had quite a toothache, which I had ignored for a while. It was in my one remaining wisdom tooth, and the dentist told me right away it had to come out.  While pulling it out, the tooth next to it fell apart, so they both were extracted.  I have Sjogren's Sydrome, and that does a number on teeth.

At just about the exact time my teeth were coming out, my father in Maine had a terrible fall.  He was on a ladder, and it slipped.  Holding onto the ladder, he was slammed to the ground.  Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae.  Later, it became apparent he'd also had a bad concussion.  He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks.  Thankfully, he's doing much better, but the recovery was tough.  He's 77, and anesthesia does a number on older men, we've found out.  He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought.  Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.

The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain.  However, immediately, I felt I should be there.  I still feel that, a bit.  It wasn't possible. My pain level from the extraction was very high, for about 10 days.  That's another gift from the Sjogren's Syndrome.  I have almost no saliva, and that makes it very hard for a mouth to heal.  I could barely get out of bed.  In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat.  We were ready for a new car, but shopping for one?  That was tough.  It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.

The guilt of that week---I can barely describe it.  My father was in terrible shape, and I couldn't get to him.  In my mind, the rest of our reality seemed unimportant.  I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"

I know that from the outside, things look differently.  But from the inside, guilt is a strong and often irrational emotion.  Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities.  Guilt just pounds away at you.

Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home.  There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital.  My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus.  In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.

With my clearer thinking, I've realized a few things.  The biggest of them might seem a little unrelated, but it hit me hard yesterday.  For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it.  But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school.  I trust her school completely.  We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her.   When she isn't in school, I want her with Tony, her brothers or me.  That is what I feel good about.  I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.

The other realization is that hard as it might be, I need to prioritize.  In other circumstances, of course I would have been by my father's side.  But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first.  When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.

I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often.  It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do.  It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.

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.

With just a little editing....

Janey, Freddy and I went up to Maine to visit my parents for four days, last Saturday through Tuesday.  My parents live in midcoast Maine, where I grew up, and I hate to have a summer go by without visiting there.  There is something about the summer in Maine that simply can't be found anywhere else, and I want my kids to know a little of that, especially this year Freddy, as he heads into adulthood---he will start college in eleven days.

Janey and the chickens

How did it go?  Well, with a little editing, it went well.  I got to show Freddy a lot of the places that I loved growing up, and he got to spend a lot of time talking with my parents.  Janey loved running around barefoot outside, talking a long walk with Grampie, singing along while Nana played the piano and running around after my dear friend Julie's chickens.  I got to take a lot of deep breaths of Maine air, and of course I took too many pictures, literally over a thousand.

What gets edited out?  Screaming, mostly.  Janey had many, many screaming spells.  They came on suddenly and often without any reason we could figure.  They were intense and overwhelming.  My parents live on a back dirt road, but they do have neighbors, and luckily, they had talked to the neighbors about Janey, or it well could have been thought something awful was happening to her.  The most severe editing dealt with a drive we took up Mt. Battie.  Mt. Battie is really a hill, but it has a view worthy of any mountain on earth, of Camden Harbor and all kinds of islands.  I wish I could have enjoyed it for more than a few moments, but something there triggered Janey and she flipped out and was hysterical, and bit me pretty hard.  We left fast.  Later on that drive, she did all she could to bite and hit Freddy, next to her in the back seat.  It took both our strengths to keep her from hurting him.

The briefly seen view from Mt. Battie

Janey, Nana and Grandpa

Freddy and I can look back on the trip and feel pretty good about it.  I'd say 80% of the time, Janey was fine, and sometimes, she was more than fine---she was a delight.  But that 20%...I don't think much of anyone except someone who has lived this life for a while could edit it out as we do.  My parents did a very good job with Janey, but they were shaken.  Like many people who see Janey's intense moments, they wonder how it's possible to keep going.  They worry about her safety and our safety.

So---is editing a good idea?  Should we do it?  The question is more if we could stop doing it if we wanted to.  If I thought all the time about the awful moments....well, at the very least, I wouldn't enjoy the good moments.  I have to edit in my mind.  I have to think about Janey's delight running after the chickens, the fun of hearing her surprise my parents with yet another song she knows, the wonderful moment when she saw Daddy again and said, confused about the exact terms, "It's your brother Daddy!"  Reversed pronouns and muddled relationship names aside, her voice showed how she felt.

We can edit, and can be left with memories of a good trip.  But the larger world can't be asked to do the same.  And more importantly, I don't know if Janey can do that editing.  How does she remember things?  Does she remember the good times, or remember the scary, out of control times?  How would she tell me she felt about our time in Maine, if she could?  I don't know.  I really don't know.  I hope she would understand that we are trying hard to give her a good childhood, and that we are doing our best, and that we would do anything within our power to ease the tough times for her, if we knew how.