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.

Just Plain Old Awful

Here's a warning for you.  Usually I try to be at least somewhat upbeat in what I write, or at least not totally downbeat, but this post is not going to be that way.  I'm just going to take advantage of anyone reading this to rant a little about the second half of yesterday.

The first half of the day was fairly decent.  Janey went to summertime school, I got some needed housework done while she was there, and took a nice little nap.  I picked her up, and got a fairly halfway okay report (she had bitten herself a few times and freaked out a few times, but had good moments too---an aside here is that I bet for a lot of parents, that would be one of the worse reports of a school day they have ever gotten, but for me it was, well, not great but okay), got her home, managed to give her a shower and wash her hair, which she had not been wanting lately, got some dishes done although the hot water wasn't somehow coming out hot...nothing extremely wrong with that first half of the day.

Then, about an hour after her shower, I was starving.  I hadn't eaten lunch yet, and it was about 3.  Janey was on the couch playing with her iPad and pretty happy, so I went into the next room and quickly microwaved a frozen meal.  I was heading out to eat it near her to keep an eye on her.  She was walking toward me, and as often is the case, it took me a minute to register that her hands were completely covered with something like chocolate, that isn't chocolate, that is much worse than chocolate.  I looked at the couch, and realized it was covered with said substance, the floor was scattered with it, and the iPad was complete fingerpainted with it.  This kind of situation is truly a 2 or 3 person job, but there was only me in the house.  I followed the routine I've worked out---grab her first, head to the bathroom, clean her up (which is easier said than done, and I'll spare you the details), go back to the scene of the crime, make her sit on the other couch and tell her in extremely firm tones to STAY THERE, and start the fun cleaning up.  It took a long time.  Thank goodness I had the foresight to buy the best iPad protector cover I could find.  It's saved the poor iPad about 5 times now.  Removing the cover and cleaning it was the last step in the ever-entertaining sequence.  Needless to say, by that point my food was cold and I wasn't hungry any more anyway.

So, flash forward a bit.  We need to pick up Freddy at his summer job, which is about a 45 minute drive away.  Tony was home by then, and I decided Janey and I would ride along with him, as my exciting outing out of the house for the day.  Janey usually enjoys a car ride, and the first leg of this one wasn't bad---she screamed the first half, but then calmed down (and I again had the thought---for many people, that first part of the car ride would have been the worse car ride of their life, but I've developed pretty low standards for what is okay)  We picked up Freddy, and then we were idiots.  We were all starving (I still hadn't eaten) and right next to his work is an Old Country Buffet---the one restaurant we sometimes attempt with Janey.  We decided to go.  Well, this was an OCB we hadn't been to before, and I swear it was the most happening place I've ever been in my life.  Picture a huge room completely filled with families, millions of little kids, long cafeteria style tables, balloons and cotton candy and excitment all over.  I guess they have some kind of special summer night deal for kids, and boy, did the local crowd take advantage of it.  It was a loud and rocking place.  So did we do the sensible thing and realize it just wouldn't work for Janey?  No, we did not.  We went on in to eat.  You can pretty much write the rest yourself.  It might have been okay, if there had been any french fries, but for some reason, there wasn't.  That set Janey off.  She started to scream.  And the whole place, apparently eager for some dinner entertainment, stared at her.  Adults, kids, waitstaff, the whole crew.  They all stared.  I am not overstating this.  I was in the center of a huge room of staring, judging eyes.   We stayed as cool as we could.  I led a screaming Janey up to the buffet, found her some chips and salsa, and got her back to the table.  For a little while, she ate some salsa and was a bit okay, but when she started to scream again, I gave up and took her out of the car, after having stuffed in a few bites of I don't even remember what.  Tony and Freddy ate for a bit more, and then we were off for the ride home.

The ride home---oh, yes.  It was hell.  Janey screamed the whole way, with intensity.  We were trying to hear about Freddy's day, to regroup after the dinner, to just get home, and she screamed.  And bit herself.  And at one point, bit Freddy, although he managed to not get much hurt.  And flung herself around.  I tried my damnest to talk to her in calming tones, to sing to her, to do whatever you can do in a car to comfort a child who is completely totally freaked out.  It was one of the worst 45 minutes I've ever had.  I was never happier to get home, and Janey had worn herself out to the extent she collapsed and slept.

Normally I'd try now to sum this up and put some kind of spin on it, to figure out what I'd done wrong, to see the day from Janey's perspective, to learn from it, to not just be completely negative.  But for just this once, I'm not going to.  I'm just going to close here, with all I can really think of to think---I hope today is better.

Old Country Buffet night out

I am not a huge fan of Old Country Buffet, but we have discovered that Janey is. We went there a few weeks ago, and she had a wonderful time. Last night, we were engaged in one of our favorite family pasttimes---driving around having an extended argument about where we should eat. With strong individual tastes, a limited budget and a family full of people unafraid to express their opinions as vehemently as possible, it's a good time. And for the first time, Janey got truly in on the fun. We were about to go into 5 Guys, the burger chain, and she completely freaked out. That isn't new---she often does that when we go out places. I was ready to pack it in and go home, or maybe just get a little McDonalds, but we decided to sit in the car for a bit and talk to Janey. We asked her "Where do you WANT to eat?" I think we gave it a try because she was in an extremely good mood right up until we started into the 5 Guys, and so we had a feeling it wasn't just general crankiness. It took a lot of asking, and wording things differently, but eventually she said "I want to go to the buffet!" Of course, we weren't sure if she was just talking to shut us up, or not really meaning what she said, but we headed to the buffet. There was a huge line, and I almost just gave up again, but Tony asked her "Do you want to wait in the long line or go home?" and she said strongly "Wait in the long line!" And she did---for the most part, very patiently, for about 20 minutes. And when we finally got seated, she was as happy as a clam---eating a lot, all smiles, just seeming very pleased that we understood her and she was where she wanted to be.

There's a lot about Old Country that works for her. You get the food right away, it works for people with odd tastes, it's a loud and happy environment, and, well, to put it delicately, being a little odd doesn't exactly set you apart there. If aliens landed on earth, and they looked like some of the people in that bar scene in Star Wars, they could go eat at OCB and fit right in. Janey was so happy she spent a lot of time making her loud happy noise, the long drawn out "AHHHHHHHH!" and although she got some looks, we gave some looks to others as good as we got.

Tony and I were talking about how we can take Janey back to the Old Country for her birthday. It's good to know a place that's truly a treat for her, even if it's not our choice. It's great we are able to include her in the family tradition of advocating for favorite eateries and dissing everyone else's as loudly as possible. It's fun to have her be just one of us.