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.

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!

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.

The everyday, autism style

I was tired today.  I'm tired pretty much every day, to be honest.  But today wasn't after a particularly bad night or crying spell or rough patch with Janey, and I was feeling like I should have more energy.  Then I thought about how every day, every routine, every part of my life is affected by Janey and her autism.  Not always in a bad way, but almost always in a tiring way.  I picked one part of a typical day and thought it through---the ride to school.

We head out of the door.  At the top of the steps down to the driveway, Janey stops.  She stands there, looking into space, looking like she has no idea what comes next.  I try hard not to take her hand and lead her down.  She is very capable of walking down the steps by herself.  I go to the bottom and call to her "Come on, honey.  It's car time.  Come down and get in the car."  If she's exactly in the mood, she might, but usually she gives no sign of having heard me.  Sometimes I say it again and again, finally using my firm voice---"come down the steps RIGHT NOW"  That usually does it.  Other days, when we are rushed, I go up, hold her hand and guide her down.  We go to the car.  I open the back seat.  She stands by the door, again, looking confused, as if this is something we've never, ever done before.  I say "Get in the car, please"  She ignores me, 9 times out of 10.  Like the steps, some days I wait it out, saying it over and over, other days, if we are running late, I take her hand and guide her in.  I tell myself every day I will leave early enough so there is time to always just wait her out, but you probably know how that goes.  When she gets in, I buckle her in and we are off.

While we are driving, there are a few things I need to watch for.  Janey likes to put things in her mouth.  Food if possible, non-food things if that's what's around.  I try to keep the car free of floor trail mix, but I am not the tidiest person in the world (those of you who have met me in person, please stop laughing!), and Janey sometimes finds an old chip or cracker.  I yell out "don't eat food you find on the seat (or floor)!"  But she knows I'm driving, and she does what she wants to do.  I figure we all have to eat a peck of dirt in our life, they say, but it's worse when she bites on a stuffed animal, or book or the seat belt, or whatever.  It's hard to drive when you are keeping an eye on the back seat always also.  I put on music, most days.  Janey likes most of my music, but when she doesn't, she screams, and I change the song quickly.  I've tried in vain to teach her to say "I don't like that song!" but she prefers the scream.  If she does like a song, she will quickly say when it ends "Do you like that song???" with extreme intensity.  That means I need to play it again, or risk a catastrophic falling apart.

The drive to school takes around 25-30 minutes, through Boston traffic.  I hate to drive, but this route has become so familiar to me I don't hate it quite as much as most.  It's still a constant stress, though, and spending 2 hours of my day behind the wheel total is probably a big part of the tiredness.  But it's worth it, to have Janey at a school I love.  She could take the bus, and I think about it, but I don't think I'm ready.  Unlike my bus growing up or the bus in smaller towns, I don't know the drivers, and many of them don't speak English well.  Janey is prone to screaming, prone to unbuckling her seatbelt, prone to not being an easy passenger.  The buses are often mostly empty, due to Boston's odd school zones and busing history.  And it makes me nervous to think of a mostly non-verbal girl, possibly by herself on a bus with a driver I don't know.  I might need to get past that some day, but I'm not ready to yet.

We arrive at the school, and find a place to park---often quite a challenge.  There is no parking lot, just assorted on street parking.  I open Janey's door and say "Unbuckle your seat beat and hop on out".  Again, the blank look, as if I am asking her something bizarre and unheard-off.  I started having her unbuckle herself when we got to school after a series of times she unbuckled herself while we were driving, always at the middle of some dangerous and not stopping-friendly intersection.  My aim was to teach her the right places to unbuckle, but I don't think it's worked.  She finally, after the same routines of re-asking and guiding, unbuckles and gets out.  I put on her backpack, and we walk in.

Lots of people say hi to Janey.  She never answers, in the morning anyway.  Sometimes in the afternoon.  She goes into the school with her blank, stoic look.  Once in a while, if not a lot of people are around and we have time, I try at safe places not holding her hand, to see if she has any idea where the school is and where her room is.  She usually just stops in place if I let go.  It's like I am her motor.

When we get to her room, I give her a kiss.  Her teachers remind her to say goodbye, and after enough reminders, she does, in a fashion.  I don't linger, but I stay long enough to see her standing there, waiting for the next reminder.  She's had the same routine in the mornings for 6 years now, but every day, it seems new to her, as if she's thinking "Take off my backpack?  Wow, that never once would have occurred to me!"  I get in the car and head home.  Sometimes, I take a nap right away.  And I try to not judge myself for that.