Christmas, not so much presents!

I recently asked if people on the Facebook group that is a companion to this blog wanted to talk about their girls at Christmastime (if they celebrated Christmas), and many did---thank you to all of you!  (and if you are reading this and have a girl with autism in your life, and you aren't already in the group, I'd love to have you join---it's a friendly and welcoming place!)

A few things stood out about our girls and Christmas.  One is that it's not about the presents, for the most part.  Another is that it can be an overwhelming time.  But with those things kept in mind, most of the girls and their families did find a way to enjoy Christmas and make it a special time.

The part about the gifts was striking to me, in that most of the girls were like Janey---not big fans of gifts.  Of course, there are exceptions, but for the most part, gifts were one of the toughest parts of the season.  In a way, that might sound like every parent's dream.  We hear over and over that Christmas isn't supposed to be about getting presents, and of course it isn't, but presents are a big part of it, and to have a child that no only doesn't much want any presents but can even be actively upset by them is hard.

There were some great ideas people have.  One person talked about making the Christmas stocking full of small unopened toys, instead of having presents under the tree that had to be opened.  Another idea was having one box with all the presents in it, to reduce opening.  A great idea was giving a little present each Sunday of Advent, to practice.  An important thing is finding presents our girls actual like---like sensory toys or food.

I've always struggled with presents for Janey.  Part of it for me is a feeling of equality.  I don't want to just give her brothers presents and not her (although, to be honest, Janey would not notice or care).  And I ENJOY getting toys and gifts for Janey.  But she hates opening presents.  She doesn't get it, and it is not fun for her.  This year, there was a wonderful moment when I asked her what she wanted for Christmas and she actually answered "a book", so of course there will be a pile of books for her under the tree, but I won't wrap them.  I will give her one wrapped present---a tabletop drum set.  And her stocking will have a lot of chocolate in it (yes, I know I've said in the past chocolate makes her crazy and insomniatic, but she loves it, and I want her to get something she loves)  I won't try to make her watch her brothers open things, and I won't be upset if she shows no reaction to anything she gets.  That's the plan, anyway.

I think one of the most stressful parts of Christmas for us as autism parents is that our kids often have a hard time sharing Christmas with extended family and with friends.  We can control things to some extent at home, but it's hard when visiting others.  And it's hard sometimes for grandparents and other relatives, too.  They want to share Christmas, to give presents, and it seems to go against what is expected that the very sharing and hospitality and presents can be a source of stress.  A lot of families just don't make visits, or if they do, it's to one place each year.  We go every Christmas Eve to a dear friend's house.  Janey knows the family well, and I think knows that is the plan.  She is an early to bed kid, and so we have a lot of the night after she falls asleep for the our two families to have time together, but while she's awake, they know her and make sure there's food she likes and routines she understands for her to enjoy.  That means a great deal to me.

What do our girls like about Christmas?  A lot of girls like the tree and the decorations.  Traditions also seem to fit naturally with autism!  They are routines, after all.  And for Janey, and some other girls, the best part of Christmas is the music.  Starting at the beginning of November, I switch my iPod to an all Christmas list.  I know a lot of people hate Christmas music too early, but for Janey, that's a compromise---she'd listen all year, and at least keeping it to two months makes it a little more special!  I sing carols to her every night at Christmastime as she goes to sleep.  She seems each year to pick a carol or song that she loves best.  This year, it's been "Hark the Herald Angels Sing"  She especially seems to like later verses of carols.  She's gotten very annoyed with me a few times for not remembering all the verses of "We Three Kings", especially the depressing one about sorrowing and dying!

One of the most amazing and wonderful moments ever with Janey, one of those I hesitate to mention almost because it seems like one of those "autism is magic" stories that in daily life don't really happen that often---when Janey was about 6, she heard the Hallelujah Chorus from The Messiah for the first time, in the car.  She was quiet and looked to be in awe for the whole thing, and when it was over, she burst into applause, clapping for a long, long time---something she had never done before for a song, much like the first time George II
of England heard it and stood up in honor, which has become the traditional thing to do.  It was a moment I'll remember all my days.

Autism never takes a holiday.  That can be very tough at times like Christmas.  It's hard having to adjust plans, presents, visits and expectations for the whole family to avoid meltdowns, but not doing so is even harder, as a meltdown filled Christmas is not fun for anyone.  Overall, I felt encouraged by hearing from others about their Christmases.  We seem to find a way to find joy in the season even with the challenges.  It's not easy, but not much of this autism parenting gig is.  I hope all of you have a wonderful Christmas and/or New Year.  We are all in this together, wherever in the world we might be, and that truly does help.  Merry Christmas.

What it's like to visit a psychiatric hospital

Having Janey at Bradley Hospital, visiting her there, felt at first like something no other parent in the world has ever done.  However, when I thought about it more, I realized I can think of four other parents I know who have been in this situation, who have had children at psychiatric hospitals. Although I don't ever want anyone else I know to have to go through this, knowing that others have lived this somehow helped a little.  I won't tell their stories, what I know of them---they aren't mine to tell.  But I thought I'd describe what it's like to visit Janey in more detail, just in case any of you ever do have to live this.  You won't find this story in the cheery pages of parenting magazines.  The other mothers volunteering at the school or with their kids at the playground probably won't be chatting about this.  But it happens.

Driving to see Janey takes a varying amount of time, depending on traffic.  It's been as quick a drive as 50 minutes and as long a drive as two and a half hours.  During the drives, Tony and I listen to the radio, a classic rock station I don't know if I'll ever be able to listen to in the future, as it will feel forever associated with this time in my life.  But for now, it helps.  We can talk about the songs instead of our lives right now.  Often, Tony has worked all day before we drive, so I try to keep talking, to keep him alert.  But sometimes, there feels like there is little to say.  We cry now and then.

When we reach the hospital parking lot, every single time I get a strange feeling in my stomach.  It's a dread feeling, a scared feeling, a odd feeling I don't think I've ever felt in other situations.  I've felt dread and fear plenty of times, but this is different.  No matter how much I think I'm prepared for the visit, no matter how much I try to feel upbeat, it hits me.  I don't want to be here.  I want to see Janey, desperately, but I don't want to go in there.  It's not that it's not a nice place.  It's a beautiful place---clean, as friendly as it can be under the circumstances.  But I doubt anyone really wants to visit a psychiatric hospital.

When we park, I leave my pocketbook in the trunk.  You can take almost nothing in with you---no cameras, cell phones, watches, things like that.  I get my licence out.  We go into the waiting room and go to the desk, to tell them we are there.  We give Janey's name and our names, and show them our driver's licences.  We get visitor stickers.  Then we wait for someone to come get us.  The waiting room has lots of magazines and comfy chairs. But I hate being there.

After a few minutes, either someone comes from Janey's ward to get us, or one of the receptionists takes us to her ward.  To get there, three different doors need to be unlocked--that is why we always need to be escorted.  Outside the final door, there are lockers, and there Tony puts his car keys, switching them for the locker key, and we put anything else we might have that can't go into the ward.  Usually all we are carrying in is a bag of clean clothes for Janey.

When we get inside, we are in a big common room.  It's open and airy and nice, but it somehow doesn't seem like the kids spend much time there, at least when we visit.  We sign in there, and are taken to where Janey is, which usually is a smaller room near her bedroom.  There are two sections to the part of the hospital Janey is in, with a total maximum for both parts of 19 children.  Here's a link to more information, if you are interested.  The smaller room has tables and a television, and there are usually more adults working there than there are kids.

Janey generally spots us quickly, and looks happy to see us.  That's the best part of the visit---her smile when we get there.  My heart leaps every time I see her after being away.  Last night, we both felt she looked taller and older, even after seeing her just two days before.  It is so strange to see her there.  We take her into her room.  All the visits take place in her room, so we don't disturb the workings of the ward or the other kids.  The room has a bed, a table and a chair.  It has a closet which is usually locked, but which they unlock for us so I can get her laundry and put in her clean clothes.  There is a bathroom which is for her and a child on the other side of the bathroom.  Only one side is unlocked at once, so she has in essence a private bathroom.

Our visits are not as long as I wish.  We usually stay about a half hour to an hour.  We leave when Janey starts get restless, hopefully before she gets frantic.  We have not been able to spend time with her outside of one room for two and a half weeks now.  I think she is starting to see time with us as the boring time.  It gets hard to entertain her.  We play catch with her Care Bear, we sing songs, we tell her what is going on at home, we try to keep her engaged.  She asks for singing---last night she said "Christmas songs?" and started singing "We Three Kings of Orient Are" to prompt me.  She asks us for things we don't have there---cookies, bacon, chicken nuggets, fries, chips.  We never happen to bring the right things.  Eventually, she starts asking to take a walk.  We can't walk around with her there.  She starts to show signs of getting anxious, and eventually we reach the point where we know it's time to go.  We take her back out to the workers and say goodbye.  Sometimes she gets upset when we leave, and asks to go home with us.  Other times she seems relieved we are going.  I am not sure which is harder to take.

Usually, someone walks us out to the front desk, although a few times we've walked ourselves out.  We give back the visitor stickers  On the drive home, we analyze the visit.  We talk about how she seemed---calmer?  Happier?  We think about how things will be when she's home.  Then, we concentrate on getting home safely.  There's a part of the highway, near Pawtucket, which seems to be a center for cars chasing each other in some scary highway race, and we brace to drive through that.  Sometimes, we stop to get Freddy fast food on the way back, as we often don't have time for dinner before we leave.  We get home, exhausted.  We spend time with Freddy, the one child home right now, the child who is almost an adult.  We breath, and we get ready for the next visit.