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.

Thinking about my sons

My boys are home from college.  I guess it would be more accurate to say my men are home from college, as they are both really adults now, but they will always be my boys.

They both aren't working this week, and Janey is in school still, so I'm getting a rare treat, time with them both, without schoolwork looming over them.  It's great.  But it's also making me think a lot about how Janey has affected them.

In some ways, because they are both so much older than Janey (7 and 10 years older), it hasn't been the typical situation for siblings for a child with autism.  I can't even quite wrap my mind around how it would have been if they all were close in age, although I know many of you have that setup.  Because they are older, I'd say it's been easier on us as parents, but maybe, perhaps, actually tougher on them as siblings.

From the time Janey's tough behaviors really started, when she was around 3, in many ways, the boys have been on their own.  Of course, not totally, but so often, we were simply not able to do things as parents for them that most parents would do.  We missed school events, we were unable to help much with homework, we couldn't go on family vacations or eat out or actually do very much as a whole family at all.  We used a lot of "divide and conquer".  One of us would care for Janey, the other would go to the play or do the drive to a friend's house or sneak out for a birthday meal.  The boys almost never got both of us at once.

Way too often, I read cheery, almost flip accounts of how having an autistic siblings helps kids.  They are supposedly more compassionate, more caring, somehow bettered.  That might very well be the case.  I am very, very proud of my boys.  They are fine young men.  But I don't think this is because of Janey's autism.  That doesn't seem like a fair burden to put on either Janey or the boys---that somehow she made them better.

I think the truth is that they missed out on a lot.  I think about the time of Freddy's graduation from high school, last year.  That was an exceptional time, due to Janey's long hospital stay, but only I was able to attend his graduation.  Neither of us saw him off to his senior prom.  We weren't there for just the general excitement that goes along with the end of senior year.  I can't sugarcoat that.  He missed out.

Both boys have learned to be independent.  They probably had more freedom and less parental involvement (or interference) than most kids their age.  We certainly weren't able to be helicopter parents.  Although that might be a positive, it wasn't a choice.  It wasn't a parenting style.  It was just reality---how it had to be.

I can't even begin to count how many times there were that the boys wanted to do something, like watch a TV show as a family, but Janey had a meltdown and we wound up not being able to.  I think too often, we just expected the boys to understand that her needs had to come first.  I feel guilty about this, although I don't honestly think there was a way we could have handled it differently.  If we tried, as we did a few times, to power through Janey's outbursts and screaming and keep to our plans, it wasn't enjoyable, and the boys usually were the ones to call it, to give up.  I can't sugarcoat that.  I do know that as kids get into their teens, hanging out with parents is not always the top fun on their lists, but I wish we'd had more chances to give it a try.

This is a pretty downbeat post, but it's an honest one. I can honestly say, though, that the boys love Janey and she loves them.  We're a family.  Having a sibling with autism is a fact of the boys' lives, and always will be.  She's not a character builder, or a barrier to overcome, or a inspirational story to tell.  She's their sister, and all three of my children are amazing people. I'm pretty lucky that way.

Through the years we all will be together...

Easter Sunday was quiet at our house.  We don't visit family or friends, we don't go out to dinner.  Janey can't be around younger kids much, due to her aggression at times, travel to far flung loved ones is tough, and eating out...well, it's not worth spending a good deal of money to rush a meal, waiting for the meltdown.  So we stay home.  And truthfully, it's okay.  We are loners a bit.  But this year, both Tony and I were feeling a little emotional about our Easter.  It took us until about halfway through the day to realize it was the first year with neither boy home.  Our family felt small.

Janey was in a good mood all day, though.  We had fun early in the day taking a long ride into the city.  We love early Sunday rides, with little traffic.  Boston is a great city, when you take away the traffic nightmares, and we enjoyed driving through some neighbors, like the Little Italy of Boston, the North End, that we don't often see.  We all had some chocolate (Janey's early in the day, to prevent non-sleep!) from huge chocolate eggs that Uncle Pino gave us, and Tony got some of our favorite Gimbel's jelly beans.  It was a fine day, but I was still feeling low.

We aren't very religious, but I certainly wouldn't mind going to church on Easter.  We haven't found a church, though, that we can go to with Janey.  We want church to be a family thing, like it was with our beloved Hyde Park Congregational Church that shut down when Janey was two.  But there is no way on this earth Janey could be at a service, and there is also no way she could attend Sunday School without someone one on one with her.  So, we don't go to church, and that feels a little funny on Easter too.

Looking at Facebook during the day, I of course saw many pictures of kids at Easter gatherings.  I didn't make up an Easter basket for Janey, because she has never had any interest at all in that (or stockings) and because we would end up eating all the candy she didn't want, or she would end up eating chocolate bunnies and not sleeping for a week.  But I decided I wanted to take pictures of Janey for Easter.  I love taking pictures, especially of Janey.  I got out my iPad and used the Hipstamatic app, which has all kinds of virtual lenses and film that it picks at random each time you take a picture.  I adore it.  I took about a hundred pictures of Janey, to see what got picked and how they came out.

While I was in the middle of taking pictures, suddenly and unexpectedly, Janey began to sing.  She often sings a few lines of songs, but it's rare she sings the whole song, although she knows many by heart.  This time, however, she did.  She sang "Have Yourself a Merry Little Christmas", the whole song, in her otherworldly high and perfect singing voice.

I try hard on this blog to portray autism honestly.  Autism isn't a series of miracles, a savant hidden in an unexpected place, a innocent showing us all the way.  But in every child's life, including Janey's, there are a few moments that take the breath of parents away.  Janey's singing yesterday was one of them.  As she sang "Through the years, we all will be together, if the fates allow...", I cried.  And held her close.  She had sung the song, that, if not seasonal, most perfectly captured the mood I had been feeling all day.  For that moment, our troubles were indeed far, far away.

Road Trip

This past weekend, we took Freddy back to college in Saratoga Springs, NY.  We were going to make it a one night trip, but with the early week reports of the blizzard possibly hitting Boston, we added Friday night on.  The blizzard didn't hit, but the two nights away made for a good little getaway.

Janey did extremely well with the trip overall.  There were many great moments.  She loves hotel rooms, and we stayed in two different ones (as it was too late to add a second night to the first one we booked).  She literally danced around with joy at her first sight of each one.  I've heard a few other parents of kids like Janey say that their kids love hotels, too. I'm not sure why.  Part of it with Janey is that hotel rooms tend to have lots of mirrors, and she very much enjoys mirrors, but I think part of it is just having a new little pocket world to explore.  She can go anywhere she wants within the room, and that gives her something new to explore on her own---something she doesn't get a lot of.

When we ate in public on the trip---one trip to Wendys and one to the hotel breakfast buffet, and when we went to the Target to get Freddy some last minute things, I realized something interesting.  It doesn't bother me when Janey gets stared at anymore, not really at all.  She was stared at plenty, but although I noticed it, I was able to pretty much ignore it.  Or else I thought "Yeah, here's one of those kids with autism you hear so much about in the press, live and in person!  Feast your eyes!"  It was a bit of an in your face attitude I felt, and believe me, that is not an attitude that comes easily to me.  But as Janey gets bigger, she stands out more and more, and unless we keep her out of sight at all times, she's going to be stared at.  And...so be it. Especially in the Target, there were plenty of odd people that I think warranted more staring than Janey, but that's life.

I also noticed during the trip that we are better able than we used to be to set aside tough moments and remember times as positive.  There were certainly screaming moments on the trip, times that Janey for no reason we could see just lost it and screamed and bit her arm, times that she was quite unhappy.  But we know now that usually, unless something big is going on, these times pass if she's in a generally good mood.  She said one of her longest sentences in a while when looking in the mirror---"I have one blue eye and one big eye"  She actually has two blue eyes that look the same size to me, but it was a cool moment to hear her thoughts while looking at herself.  She also did a lot of singing and dancing---always fun to watch.

As the years go by, I think we are learning to meet Janey in the middle.  For someone with typical kids only, this trip might have seemed like not much fun.  We did little outside the hotel rooms or the car.  We drove around a lot, as Janey loves that.  We did get out to dinner, just Tony and me, on Saturday night---thanks, big brother Fred!  We dealt with a few meltdowns, but we also laughed a lot.  Our lives with Janey are never going to be mainstream.  She's going to be stared at, she's going to scream at times, we aren't going to be able to do typical getaway things.  But we will also have the fun of watching her joy at little things, and the freedom, in a way, that comes from having a preteen that still gets a thrill out of being with her parents doing not much. We'll keep on going, and take our fun where we can get it.